Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => That Familiar Feel => Topic started by: Daveman on June 22, 2012, 01:57:28 PM

Title: This may seem like a familiar place.
Post by: Daveman on June 22, 2012, 01:57:28 PM
Hi all,

This may seem like a familiar place, created to cater to the free flow of thought that many are used to.

And what the hay, if anything really good springs forth we can branch it off and create a special thread to deal with that.

BTW everybody, if you use this link ( http://poiscenter.com/forums/?action=.xml;type=atom ) and paste it into your regular EMail client "Outlook or whatever", you will automatically be sent all the latest posts, so it is easy to stay on top of new information. It is called an RSS feed.




Title: Re: This may seem like a familiar place.
Post by: Daveman on June 22, 2012, 02:39:15 PM
The link to the latest in this thread is:

http://poiscenter.com/forums/index.php?topic=426.0.new
Title: Re: This may seem like a familar place.
Post by: Stef on June 22, 2012, 10:08:00 PM
This is wonderful, Daveman!!!!!

You are a miracle-worker.  :-)

Stef

 
Title: Re: This may seem like a familar place.
Post by: demografx on June 22, 2012, 11:25:36 PM
Ditto, Stef!!

T H A N K   Y O U   D A V E M A N !!!
Title: Re: This may seem like a familar place.
Post by: demografx on June 22, 2012, 11:33:38 PM
This place looks and feels so familiar, I want to post...


(http://i858.photobucket.com/albums/ab143/demografx/012f9113.jpg)
Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:28:03 AM

I increase my initial pledge from 100 to 400 $, so that I would have given 500 $ totally :) It is the money I will get with my internship. Instead of putting it in a stupid video game and so on, the best investment for the future is to give to NORD !


THANK YOU, HABIBOU!
Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:30:26 AM

I converted another $500 of my pledge to the donated column.


Thank you, B_Daniel for doing that amidst all that medical frustration!

Best,
Demo
Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:37:53 AM


(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:39:14 AM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)





Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:46:17 AM

I just gave $100.00 for the POIS fund and I will still be donating this amount for each of the next 12 months. I expect that I could give more in the next months, but this amount I guarantee.

I´m giving for POIS because this disease screw up my life and I know that, even that we have chance to descover a cure for our own, our chances will be a lot more with especialist researchs and methods.

I know that a lot of people here don´t have a lot of money but the situation isn't easy for no one. For me, in particular, is more expensive because brasilian coin has a half the value of dolar. Let´s go people, let´s donate.




(http://www.emofaces.com/en/emoticons/b/brazil-flag-waving-emoticon-animated.gif)

THANK YOU, FIDALGO!!
Title: Re: This may seem like a familar place.
Post by: Daveman on June 23, 2012, 08:11:29 AM
This is wonderful, Daveman!!!!!

You are a miracle-worker.  :-)

Stef

 

Thanks but as you can see Demo is and always has been the chief miracle worker!!
Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 12:55:29 PM
Awww!!! ;D
Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 02:01:07 PM
(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)





Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familar place.
Post by: demografx on June 23, 2012, 08:08:32 PM
Hi everybody,

Don't let the advertising dissuade you from posting your free-flowing thoughts.

The discussions on this thread can go anywhere and everywhere.

As *you* wish.

Best,
Demo
Title: Re: This may seem like a familar place.
Post by: kurtosis on June 25, 2012, 12:28:51 PM
Just reposting this here as it seems we've moved to a new home :)
Quote
Quote from: daveman on 21/06/2012 19:55:04
The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I?ve noticed before, that a full and complete ?O? seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad ?O?), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.

It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above,  the dreamy state he mentions is associated with what I have felt when I ?O? early with too much niacin. However the benefit of the niacin is not as strong when that happens.

However like him, if my ?O?s? are complete (in a  non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.

Can anyone decipher this?

Good versus bad seems to a complicated determination to make in relation to prostaglandins. I found an interesting article at http://www.pensgard.com/nutrition/4_Prostaglandins.htm
I don't have access to the original article but I did find some references on pubmed to support their description.

We know niacin releases pgd2 into the skin to produce flushing. http://www.ncbi.nlm.nih.gov/pubmed/1373750
Some of our symptoms like gastrointestinal issues could be explained by an overproduction of PGE1. However cognitive impairments from a prostaglandin imbalance may  come from a deficiency of PGE1 (perhaps causing schizophrenia) or an increase in TXA2 causing depression.

There have been a few articles published which hypothesise that schizophrenia could be related to prostaglandin synthesis. Some of which hypothesise that some "successful" anti-schizophrenic drugs work by increasing prolactin levels and encouraging prostaglandin synthesis. However, medical science knows more about the different flavours of prostaglandin now so it's not merely a case of raising levels of all prostaglandins.

The schizophrenia and prostaglandin connection doesn't seem to have gone away. Here are some articles from pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/67391
http://www.ncbi.nlm.nih.gov/pubmed/3520252
http://www.ncbi.nlm.nih.gov/pubmed/20446881
http://www.ncbi.nlm.nih.gov/pubmed/21334179

Mice too http://www.ncbi.nlm.nih.gov/pubmed/19416671
The article about PGE2 receptors in mice is very interesting as it appears medical researchers are figuring out that low levels of PGE2 may be implicated in diseases like ALS and alzheimers.

Niacin stimulates the synthesis of... You guessed it.. PGE2.
http://www.ncbi.nlm.nih.gov/pubmed/22442634

So why would this be related to POIS? Simply because during an O we produce prolactin. Too much or too little would be a problem and would likely indicate a problem with balancing PGE2 levels.
 
A diet with too much trans fatty acids will inhibit prostaglandin production while a diet with enough b vitamins, protein, zinc, vitamin E and essential fatty acids (from fish oil for most people) could regulate production. What the right amount is and whether some unknown disease could affect the levels of synthesis is a mystery to me. It seems that any b vitamin deficiency, nutrient absorption problem or b vitamin deficiency could produce symptoms of cognitive impairment. 

Another problem may be a mutant delta-6-desaturase gene as hypothesised in http://www.ncbi.nlm.nih.gov/pubmed/3520252 or
some variant of a d-6-d malfunction.
(I have no idea whether any conclusive research has been done on the mutant d6d hypothesis but I do know that some research exists showing that arachidonic acid given to early stage alzheimer patients can lead to some improvement on cognitive tests).

If this was the case then there wouldn't be enough omega 6 fatty acids in the diet for prostaglandin synthesis. This seems unlikely given our diets are generally omega-6 rich but I've read some anecdotal reports of people who believe they're suffering from pyroluria (not getting into a discussion about whether this exists) that claim substantial improvements in concentration, anxiety levels and sleeping patterns when they supplement with zinc, b6 and arachidonic acid.

There could be an insufficient amount of ALA in the diet to produce Arachidonic acid or an inability to synthesise AA from ALA. http://en.wikipedia.org/wiki/Linoleic_acid

It's worth noting (after reading http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803) that liver was used to treat pernicious anaemia in the days before b12 injections and is also high in arachidonic acid.
Title: Re: This may seem like a familar place.
Post by: pep on June 25, 2012, 01:19:48 PM
Demo,

maybe yo can linked (hipervínculo) the photos to NORD

Title: Re: This may seem like a familar place.
Post by: eur79m on June 25, 2012, 02:04:48 PM
Re-post from the 'old place'  ;)
I hope you dont mind...


I am fed up with the medical system!

I have a valid theory what causes my particular symptoms and have proposed reasonable diagnostic procedures to test the validity of my theory.

Still, each and every doc at my local university hospital is trying to get rid of me by suggesting psychological remedies to obviously physical causes. Everything I present, facts, cause - effect relationships, correlations, references to everything you have collected in this forum so far, is generously waved away and ignored. Everybody I have met so far is too afraid to try anything new that might cause negative side effects or can be seen as a major intervention, even if I declare to bear any related costs and waving any doc/hospital liabilities. In the medical system my right to self-determination is taken away and I declared incompetent at the whim of the gods in white...

Lets start at the beginning... as I described in previous posts, my case is slightly different from the majority of the cases I read about so far, in that my POIS symptoms started together with pain in my right testicle, following what I believe was a  physical trauma of my right testicle I sustained during a spinning class (indoor cycling, balls squeezed on a hard saddle). I did have surgery (based on a wrong diagnosis) and two day relief after the surgery... until my first post-surgery ejaculation (see previous posts). Since then I am in constant POIS with right testicle pain, severity of both depending on sexual activity (always on a scale between 'bad' and 'worse').

I learned about POIS but did not know what to do about it, educated myself, and suffered throughout the last year... Only at the beginning of 2012 did I have the courage to make an appointment at my local university hospital. I specifically asked to talk to an immunologist but had to see a hospital GP first. I presented all the research you collected (waldinger everything else I could find), had all the usual tests done, including a p r i c k test with my own semen and a spermiogram. Basically all without any real results (as expected), Vitamin D deficiency, no allergy to my semen, spermiogram not great but something still seems to be alive.

My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info (http://en.wikipedia.org/wiki/Sympathetic_ophthalmia) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: http://min.us/myITMUQnQ
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.

Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!!  :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.

So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...

My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.

Any suggestions, feedback, options?

Just a quick follow-up, forgot to mention that there actually is something called 'autoimmune orchitis' which is an autoimmune inflammation of a testicle:
http://www.ncbi.nlm.nih.gov/pubmed/21842235
http://autoimmune.pathology.jhmi.edu/diseases.cfm?systemID=3&DiseaseID=20
http://www.preservearticles.com/2012032028162/what-is-autoimmune-orchitis.html

Not directly relevant to you but I believe that this is the cause of / related to my POIS...
Interestingly one of the articles mentions 'testicular atrophy', a shrinking of the testicle. The urologist told me that mine are 'smaller than usual' but that doesnt mean anything... certainly not in connection with my autoimmune hypothesis *sarcasm* ... Autoimmune orchitis was never mentioned during the talk with the urologist, however he seemed to have a lot of knowledge in the psychological field *some more sarcasm* ...
Title: Re: This may seem like a familar place.
Post by: Starsky on June 25, 2012, 02:40:06 PM
Just reposting this here as it seems we've moved to a new home :)
Quote
Quote from: daveman on 21/06/2012 19:55:04
The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I?ve noticed before, that a full and complete ?O? seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad ?O?), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.

It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above,  the dreamy state he mentions is associated with what I have felt when I ?O? early with too much niacin. However the benefit of the niacin is not as strong when that happens.

However like him, if my ?O?s? are complete (in a  non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.

Can anyone decipher this?

Good versus bad seems to a complicated determination to make in relation to prostaglandins. I found an interesting article at http://www.pensgard.com/nutrition/4_Prostaglandins.htm
I don't have access to the original article but I did find some references on pubmed to support their description.

We know niacin releases pgd2 into the skin to produce flushing. http://www.ncbi.nlm.nih.gov/pubmed/1373750
Some of our symptoms like gastrointestinal issues could be explained by an overproduction of PGE1. However cognitive impairments from a prostaglandin imbalance may  come from a deficiency of PGE1 (perhaps causing schizophrenia) or an increase in TXA2 causing depression.

There have been a few articles published which hypothesise that schizophrenia could be related to prostaglandin synthesis. Some of which hypothesise that some "successful" anti-schizophrenic drugs work by increasing prolactin levels and encouraging prostaglandin synthesis. However, medical science knows more about the different flavours of prostaglandin now so it's not merely a case of raising levels of all prostaglandins.

The schizophrenia and prostaglandin connection doesn't seem to have gone away. Here are some articles from pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/67391
http://www.ncbi.nlm.nih.gov/pubmed/3520252
http://www.ncbi.nlm.nih.gov/pubmed/20446881
http://www.ncbi.nlm.nih.gov/pubmed/21334179

Mice too http://www.ncbi.nlm.nih.gov/pubmed/19416671
The article about PGE2 receptors in mice is very interesting as it appears medical researchers are figuring out that low levels of PGE2 may be implicated in diseases like ALS and alzheimers.

Niacin stimulates the synthesis of... You guessed it.. PGE2.
http://www.ncbi.nlm.nih.gov/pubmed/22442634

So why would this be related to POIS? Simply because during an O we produce prolactin. Too much or too little would be a problem and would likely indicate a problem with balancing PGE2 levels.
 
A diet with too much trans fatty acids will inhibit prostaglandin production while a diet with enough b vitamins, protein, zinc, vitamin E and essential fatty acids (from fish oil for most people) could regulate production. What the right amount is and whether some unknown disease could affect the levels of synthesis is a mystery to me. It seems that any b vitamin deficiency, nutrient absorption problem or b vitamin deficiency could produce symptoms of cognitive impairment. 

Another problem may be a mutant delta-6-desaturase gene as hypothesised in http://www.ncbi.nlm.nih.gov/pubmed/3520252 or
some variant of a d-6-d malfunction.
(I have no idea whether any conclusive research has been done on the mutant d6d hypothesis but I do know that some research exists showing that arachidonic acid given to early stage alzheimer patients can lead to some improvement on cognitive tests).

If this was the case then there wouldn't be enough omega 6 fatty acids in the diet for prostaglandin synthesis. This seems unlikely given our diets are generally omega-6 rich but I've read some anecdotal reports of people who believe they're suffering from pyroluria (not getting into a discussion about whether this exists) that claim substantial improvements in concentration, anxiety levels and sleeping patterns when they supplement with zinc, b6 and arachidonic acid.

There could be an insufficient amount of ALA in the diet to produce Arachidonic acid or an inability to synthesise AA from ALA. http://en.wikipedia.org/wiki/Linoleic_acid

It's worth noting (after reading http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803) that liver was used to treat pernicious anaemia in the days before b12 injections and is also high in arachidonic acid.

Since omega3 and astaxanthin a potent PGE2 inhibitor help for POIS i think we are overproducing PGE2.
Title: Re: This may seem like a familar place.
Post by: kurtosis on June 25, 2012, 04:09:32 PM
That should have been niacin increases synthesis of PGD2 and PGE2 but flushes them into the skin. I think this reaction an hour or so before an O reduces the prolactin release during an O.
Title: Re: This may seem like a familar place.
Post by: Starsky on June 25, 2012, 04:57:08 PM
I did tested prolactin and it is under the normal range.
Title: Re: This may seem like a familar place.
Post by: demografx on June 25, 2012, 11:39:42 PM
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E

 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on June 25, 2012, 11:46:51 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)



Title: Re: This may seem like a familar place.
Post by: demografx on June 25, 2012, 11:52:24 PM

Re-post from the 'old place'  ;)
I hope you dont mind...

NOT AT ALL! FEEL FREE TO POST/RE-POST...even light toast!
Title: Re: This may seem like a familar place.
Post by: demografx on June 26, 2012, 12:06:13 AM
Demo,

maybe yo can linked (hipervínculo) the photos to NORD



Thank you, pep!
Title: Re: This may seem like a familar place.
Post by: kurtosis on June 26, 2012, 03:17:58 AM
I did tested prolactin and it is under the normal range.
Another possibility is not enough PGe1. Not sure how taking niacin would affect that.
A more controversial hypothesis would be that while our symptoms are similar we're not all suffering from the same thing. Different imbalances in prostaglandin levels may produce symptoms after an O but the symptoms might be somewhat different. Some people talk about allergies, some about depression and others talk about feeling schizophrenic. There may be 2 or more paths to POIS...

Also, there's a big problem with the "normal range" testing. There are people with thyroid disease who have TSH levels within range. I know someone who turned out to have a malignant thyroid tumour that wasn't discovered by 2 thyroid hormone tests. b12 deficiencies have failed to show up. There are some things which require a battery of tests for primary and 2ndary effects before they can be ruled out.

It might be useful if nordnurse could suggest some tests we could all get that, perhaps, could be given to researchers whenever they start their POIS study. 
Title: Re: This may seem like a familar place.
Post by: tantalus on June 26, 2012, 05:30:52 AM
                              Dear fellow  'lads'with P.O.I.S.

Lauracostis,Vandemolen, John21, Daveman, Demografx,
THANK YOU FOR HE WARM WELKOM, and the tips to jump to alternatives


 Like to introduce myself here as new 'Dutch languaged' member. Did only read a view posts since 2006, but will be here now on weekly basis. Like to help document p.o.i.s treatment, monitor the psychological aspects of integrating the syndrome in social live, sharing insight in progress as well  back-fall. Radiate a critical eye over my own process as well the opinion of others that will ask or tell here whatever comes up.

My P.o.i.s.  was Official diagnosed in 2004 by its 'inventor' prof M. Waldinger. I am one of the about 40  patients that is described in  Waldingers article in 2011, that undergo the subcutaneous test. [to test/prove if its an allergy or just a newage neurosis ;) ] If you are new to the allergy hypothesis  [which I still approve,but*....], see also his article written  2011  in witch he describer 2 patients  who go successfully a desensitization therapy http://www.thenakedscientists.com/forum/Smileys/default/icon_smile_shy.giftp://www.tandfonline.com/doi/abs/10.1080/009262302760328280

I did undergo the desentization also, and am  almost at the end of it ....[and with it ;>) ]

Treated with desentization, partially progressed but still in  therapy. My therapy takes now about 4 years. Not finished yet. Later on I will describe the effects of the therapy and its side effects during time between the injections. Content with actual state of progress? Sorry, NO**. Of course  much lesser days sick and lesser outlaw of society but still 1 or 2 days  frustratingly under influence of  cognition symptoms and therefore  wiser  hiding for certain social contacts those days. The progress is also floating***

The treatment policy was to keep treatment quiet for the world until first results were published.  Also the goal was not to interfere with other treatments, to keep results objective. Now the end of desensitization cums near [I went from 1 to 40.000 tot 1 to 3], I like to consider adding some help of complementary therapy. Of course I cannot read backwards all 367 posts here before I say /ask needless things, but I hope not to miss alternative healing methods or  tips to help my body accept his own sperm. Need your help to inform me postpone what i can do.

you know already (see my post on naked scientist 24/6/2012) my sidekick  to progesteron became a disappointment .postpone addition:I just removed my former post in which I described the exerience , it would be to much for you to read, wil add an other day.......  Whether 2x 5 mg was to less to work, or even enough to interfere negative if of later discussion, If  the skin itches so badly for 3 days it worked in any case!! ...my advise keep your hands of it till all  experienced are bundled here later.   I did read here before already  and in Wiki that a patient was cured!?? with progesteron supletion. Others on pois fora about 6 ? do experiments with it. At the moment i dont have info how the patients react on the progesterone. My first opinion is that the claims are dangerously vague and paradox. but have to read everything over again to 'shoot on it' successfully.

Have no clue if there are complimentary treatment methods. At the moment I get vitamin D supletion, since that is done for now on for all sufferers of all kinds of allergies. My specialist   will monitor progress with  the already started vit D supletion.


My allergist  ( keep him anonymous), tested hormones etc
for further future use/research
Vit D [normal nmol/l >50] ?........= 25.6. wich is to low, testosteron, [nmol/l 12-35] ?..?.=19.0) is ok
progesteron, [nmol/l 0.89-3.88]     =  <0.64)......[this result made me giving the progesteron  the benefit  of the doubt ]......so its intresting it did not help but even 'harm' to get it on normal level  (0.89)
FSH U/l 3-15                               =7.0
sex HBG, nmol/l 20-70 ?............=42
LH, U/l 1-8...................................=5,8blood.....
Hemoglobine , nmol/l 8.5-11.......=8.8
Ige ku/l <114....... ?.....................=9
My Ige before desensblstn Was 12 now 9  this looks intresting  , but does not ?say?  a lot. ****
since patients can experience  strong reactions with Ige levels that indicate opposites.Thats exactly so interesting with our allergy. It does not follow the usual  Ige interpretation strategy. For exact explanation of this paradox ask your own specialist.

again about progesterone:
> WIKI ?Dexters patient was completely treated (COMPLETELY TREATED ??!!) By 5 to 10 miligrames norethisterone Well?.: treated for sex related headaches or pois??  And in witch intervals the tablets are taken. And also in the days without sex? What is the effect on the organism on the long term?   Is there anybody that has spoken to dr. Dexter or his  patient, and  how!  the present situation is of that patient. Is there any administrator of any poisforum that keeps monitoring the others progesteron  adepts.
> ?Certainly POIS Sr. member of poiscenter writes in
poiscenter.com/forums/index.php?topic=74.msg476#msg476   Dosage 5-15 mg about 1.5. Hours before orgasm but no longer as 12 hrs.
Others, (cant remember the source, sorry)?.do take a tablet also after the sex, but how long after is not mentioned.
Dear  pois fellows?Please let us document this experiments more precise from now on.  I and you and we are walking  complete in the dark now.

Pois and isolation even in the own group: I like to take advantage to come in contact with other dutch patients . In 2004 I was promised to be united with the others, but during the cure never an attempt is done to unite the ones who wanted this.
Dus jongens, mannen  meldt je [weer] bij me . Kan iemand mijn herinnering dat we een keer samen uitgenodigd zouden wordeN bevestigen? Zie mijn diplomatieke antword op een vraag hierover op naakte wetenschappers,..
 

...about this forum ......disapointingly, to me being on this site is   almost nobody did effort to ad a biography part  in his/her profile. May I invite you to change this, and add some info who you are , why not even your hobbies, and the way you got the clue about your pois, single or not, books who helped you sublimate, what keeps you happy against all odds. Our cause to be here could do it with some prettier info too to digest the serious subject better, and makes us feel recogniced also in nicer side of live. :) ^

my own biography:

    Dutch,Virgo (25 august),age >45,  profession paramedical, study philosophy, Pois diagnosed  with links to recurrent herpes  hs2.  I am set free from job obligation, so all time for  hobby's: pipe organ (www.Hauptwerk.com) massage, hi end, Bach,  esspresso making, parfume,cosmology ,facebook, I am Dutch NVVE (exit) member, accepted for assisted fulfilled live,I  like friendly irony, my hero's...Voltaire, David hume, Dame Edna, movy's: Bad day at black rock, Lemming, Arteficial intelligence, the Virgin Queen, I am single, for those it matters I am gay, and had 2 relationships which were nightmares for my partners, the last partner 'engaged' me with prof Waldingers theory, and immediately emigrated far away;>)reading/writing   ironic tekst/literature   is my mental food, speak german , my escape from pois is the typical Freudian, enjoy food like  German  pasty. Favoured place: the Alps, work as volunteer for  people that had a stroke, my favorite friends: emphatic aspergers.....honest people you never get a chance to get bored.

* start to doubt if an allergy itself could not again be a result of other precursor [ design errors in our dna,genes,might we have 2 dna profiles like is already proven in other cases in the the forensic  science....but that is only my intuition/wild guess  8)

(will work out  the other asterisks in later posts)



Title: Re: This may seem like a familar place.
Post by: demografx on June 26, 2012, 06:55:59 PM
What about testosterone treatment, if nothing really works you could go for the Animus solution.

Testosterone cured my POIS.

But if you're planning a family, there are fertility risks you should discuss with your doctor.
Title: Re: This may seem like a familar place.
Post by: demografx on June 27, 2012, 12:20:10 AM

Well, with them or without them, the war on POIS will continue to be waged, and you'll raise your funds. 
This is a very strong, cohesive group that has grown up over the past year -- and you have each other, Demo, and Daveman! 

That's all you need for success. :-)

Stef


YOU ARE A TRUE, FRIEND, STEF!
Demo
Title: Re: This may seem like a familar place.
Post by: Stef on June 27, 2012, 10:06:40 PM
He Everyone!

I hope you're all starting to get used to posting your every day thoughts here.  This is THE RIGHT PLACE  do it!

There is no one here looking over your shoulders, deciding to intrude, make nasty, ignorant comments about your posts -- you are all free to express yourselves (as long as no one gets emotionally hurt by someone else's comments).

Take advantage of it over here!  You are only among friends -- all on the same team!  The thread will become more and more familiar, and the NSF thread will melt away into no-man's land. It's unfortunate -- as they will lose a lot of business and their google activity will likely drop dramatically.  But it is what it is!  What goes around, comes around.

You've got some exciting times ahead of you.  Just wait and see!!!!!

Stef

Title: Re: This may seem like a familar place.
Post by: Daveman on June 28, 2012, 09:04:48 AM
Re-post from the 'old place'  ;)
I hope you dont mind...


NOT AT ALL! Thanks. This is Home, and all ours!

Title: Re: This may seem like a familar place.
Post by: demografx on June 28, 2012, 01:52:03 PM
Dave, I don't know how to thank you for this great POISer living room and all the nice comfy chairs you put out.

Fireplace, even!!

I'm not looking back. (Restriction/Forbidden City, North Korea POIS Forum!!)
 ;D

This is a perfect place!

Best,
Demo
Title: Re: This may seem like a familar place.
Post by: demografx on June 28, 2012, 01:56:14 PM
(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,162.00 raised
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)

Title: Re: This may seem like a familar place.
Post by: Daveman on June 29, 2012, 09:30:46 AM
dear members of this thread,

I did write here My profile to introduce my history here  few days ago.
might have been misunderstood.  I did carefull screen my introtekst (see down)again, because   I was not too kindly personally advised by the 2 administrators  to not criticise others here. Luckily 1 of them did soften it later much more in pm. I'm Virgo,  so asked  friends to review my letter. Can alway make mistakes in other language. We cant find any real critisism. I quote my own sentences underneath.
Keep in mind I copied  my post from naked scientists, it was not specially ment for here, oltough i mentioned 2 posts with info of this site that harmed me indirectly because i taken the medication advice over. on my own risk , ok I admit that ...but still wanted to save others for the same mistake.

Let my quote my own tekst to give me a honest chanche to defend my true intentions.   
> Is there any administrator of any poisforum that keeps monitoring the others progesteron  adepts.
I did NOT write; " There is no administrator "   etc.     But: ...".Is there any administrator ...clearly a question only ,no criticism. Only question mark forgotten.
> disappointingly, to me being on this site is   almost nobody did effort to ad a biography part  in his/her profile.[/u] May I invite you to change this
I am free to tell I am disappointed..freedom of feelings. { the familiar feel) I continue with an invitation to change this ...not a command
i did give a lot from my own biogr.
for the rest i have many critical  questions....thats not the same as critisism
it seems more i my self is getting criticised. not bad. I am greatfull for that , because accepting criticism made me using my resourses/ talents   better. Aslong its fair and i am well readed with empathy to filter the positive out my info  rather than the to obviously  negative. i see a given  glass beer  always half full, not half empty.  May I  invite  to copycat that? I am here to service you only.   :)


 

Tantalus,



Tantalus,

I know you have had to maintain silence and have been isolated for 4 yrs or more. It must be very frustrating. I can understand that you are very anxious to get connected to the POIS community, but I ask that you be patient.

Relax, get to know the forum. You are running at a different rhythm than we. It is not that we are not concerned about advancement; we have come a long way in this area. But testing and development take time and patience.

This forum was created specifically to try to organize approaches and ideas in individual threads, but there are those who also like free flow. We are trying to provide a place for all.

If  you have a particular direction you wish to pursue, you may open an individual thread for it and throw it open for debate. But of course you cannot “insist” that everyone jump in and follow you. If you have something interesting, if you can develop a plan and organize, and more importantly if you can interest individuals here to join in, all the better.

Our “limited” evaluations show that progesterone has not been very effective; however, so far, testing has not been very extensive nor controlled. And as you may have realized, testing without correct doctor supervision can be disastrous, if not deadly. That’s why such patience is required.

We are 250 here and many more who follow the forum. It is a house for everyone.

 
Title: Re: This may seem like a familar place.
Post by: demografx on June 29, 2012, 02:09:45 PM


Hi Everyone!

I hope you're all starting to get used to posting your every day thoughts here.  This is THE RIGHT PLACE  do it!

There is no one here looking over your shoulders, deciding to intrude, make nasty, ignorant comments about your posts -- you are all free to express yourselves (as long as no one gets emotionally hurt by someone else's comments).

Take advantage of it over here!  You are only among friends -- all on the same team!  The thread will become more and more familiar, and the NSF thread will melt away into no-man's land. It's unfortunate -- as they will lose a lot of business and their google activity will likely drop dramatically.  But it is what it is!  What goes around, comes around.

You've got some exciting times ahead of you.  Just wait and see!!!!!

Stef


Title: Re: This may seem like a familar place.
Post by: demografx on June 29, 2012, 02:21:32 PM



RE TANTALUS POST
Our “limited” evaluations show that progesterone has not been very effective; however, so far, testing has not been very extensive nor controlled. And as you may have realized, testing without correct doctor supervision can be disastrous, if not deadly. That’s why such patience is required.

We are 250 here and many more who follow the forum.

It is a house for everyone.



Yes, 250+ "variations on a theme"!

We all follow similar - yet very unique - paths!

As to progesterone, my own individual testing - together with a top endocrinology-researcher/medical-practitioner - - documented at our forum - it was a total disaster.

Yet I will not discourage cautious and responsible testing under specialized medical supervision.

But even the best physicians are not yet versed in progesterone and/or T/P  treatments.

That combo could spell DANGER for the wrong people.

Especially some with POIS!

Title: Re: This may seem like a familar place.
Post by: demografx on June 29, 2012, 02:30:22 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on June 29, 2012, 02:31:19 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)


Title: Re: This may seem like a familar place.
Post by: Stef on June 29, 2012, 02:35:22 PM
dear members of this thread,

I did write here My profile to introduce my history here  few days ago.
might have been misunderstood.  I did carefull screen my introtekst (see down)again, because   I was not too kindly personally advised by the 2 administrators  to not criticise others here. Luckily 1 of them did soften it later much more in pm. I'm Virgo,  so asked  friends to review my letter. Can alway make mistakes in other language. We cant find any real critisism. I quote my own sentences underneath.
Keep in mind I copied  my post from naked scientists, it was not specially ment for here, oltough i mentioned 2 posts with info of this site that harmed me indirectly because i taken the medication advice over. on my own risk , ok I admit that ...but still wanted to save others for the same mistake.

Let my quote my own tekst to give me a honest chanche to defend my true intentions.   
> Is there any administrator of any poisforum that keeps monitoring the others progesteron  adepts.
I did NOT write; " There is no administrator "   etc.     But: ...".Is there any administrator ...clearly a question only ,no criticism. Only question mark forgotten.
> disappointingly, to me being on this site is   almost nobody did effort to ad a biography part  in his/her profile.[/u] May I invite you to change this
I am free to tell I am disappointed..freedom of feelings. { the familiar feel) I continue with an invitation to change this ...not a command
i did give a lot from my own biogr.
for the rest i have many critical  questions....thats not the same as critisism
it seems more i my self is getting criticised. not bad. I am greatfull for that , because accepting criticism made me using my resourses/ talents   better. Aslong its fair and i am well readed with empathy to filter the positive out my info  rather than the to obviously  negative. i see a given  glass beer  always half full, not half empty.  May I  invite  to copycat that? I am here to service you only.   :)


 

Hi tantalus!

I'm so glad for you that you have finally found others with POIS to share your thoughts with.  You've been alone with this much too long!

But -- it's very difficult to understand your messages (at least, for me it is). 

I don't speak a word of Dutch, but I've heard it spoken -- it's not at all like English!!

If there is someone on this forum who speaks Dutch, and could possibly help translate your messages from Dutch to English before you post them -- just for a while -- it would be a lot of help for you and for the rest of us.  Would that be OK with you -- someone from this POIS site to help translate your messages for a while???

I think there are one or two Dutch-speaking members who might be able to help out -- just until you get settled here.

What do you think about this?

Stef (nordnurse)




Title: Re: This may seem like a familar place.
Post by: tantalus on June 30, 2012, 05:09:44 AM
Dear Nordnurse, thank you  for your suggestion to improve my reply's, by asking other  Dutchman to translate it better.
If a majority (or 40% of al comments I get here and in pm's),  say the same as you, I wil take your suggestion over.

until now ( I did get much more private mails as I  aspected ), I did not get any hint that  they could not follow me.
in the contrary. I copy a pm i got this morning of a Brazilian member, and send it to you in a private mall later. I first ask his permission!
He complimented my English indirectly, by saying he could follow it verry well. ( I did specially ask him this because I doubt myselve too, if rather people here can understand my English.
But, maybe its not my English, but rather my thoughts. Maybe you  mean  my thoughts are not  (always) easy to follow. Thats another piece of cake. I would regret that, it would make my effort senseless. I need more time here to, see what others think of that. I cold be more short sometimes, I know. But it takes more intelligence as I have to compress my thoughts in less words. It consumes more time too. General I work 4 hours continuously on my reply's . My intro did 12 hours, some others 6 hours. Can be my slight brain damage. But my intelligence is.not damaged ;>).  some thing else....I admire your general idea's here in the topics, not to please you (not my mentality) but as a fact.


 May I end with a quote of : a French mathematician, physicist, inventor, writer and Catholic philosopher.
 BLAISE PASCAL
dear Friend: I didn't have time to write a short letter, so I wrote a long one instead.

http://en.wikipedia.org/wiki/Blaise_Pascal.....the quote's of him I did see  in the Dutch wiki translation



Title: Re: This may seem like a familar place.
Post by: Starsky on June 30, 2012, 07:07:51 AM
Tantalus, your english is not so bad, i undesrtand what you are writing to us.
Title: Re: This may seem like a familar place.
Post by: Daveman on June 30, 2012, 10:00:24 AM
oke , did read this a bit late...started to remove my replies  already, also the one to you. shi.  Will keep things as it is now stable , and start my answer to you again, maybe others  did appreciate  the reply too. (6 hours worked on)

I don't think there is a need to remove your replies. There are many here who do not speak English fluently, but the message gets across.

Just relax, settle in, do the best you can and you'll be fine.
Title: Re: This may seem like a familar place.
Post by: Stef on June 30, 2012, 12:59:21 PM
Dear Nordnurse, thank you  for your suggestion to improve my reply's, by asking other  Dutchman to translate it better.
If a majority (or 40% of al comments I get here and in pm's),  say the same as you, I wil take your suggestion over.

until now ( I did get much more private mails as I  aspected ), I did not get any hint that  they could not follow me.
in the contrary. I copy a pm i got this morning of a Brazilian member, and send it to you in a private mall later. I first ask his permission!
He complimented my English indirectly, by saying he could follow it verry well. ( I did specially ask him this because I doubt myselve too, if rather people here can understand my English.
But, maybe its not my English, but rather my thoughts. Maybe you  mean  my thoughts are not  (always) easy to follow. Thats another piece of cake. I would regret that, it would make my effort senseless. I need more time here to, see what others think of that. I cold be more short sometimes, I know. But it takes more intelligence as I have to compress my thoughts in less words. It consumes more time too. General I work 4 hours continuously on my reply's . My intro did 12 hours, some others 6 hours. Can be my slight brain damage. But my intelligence is.not damaged ;>).  some thing else....I admire your general idea's here in the topics, not to please you (not my mentality) but as a fact.


Hi tantalus,

I understood this post PERFECTLY!!!

So maybe it's just my not understanding your thoughts when the post is long.

I'm very interested in what you have to say -- which was my reason for suggesting help with English translation.  But this post of yours was completely clear.

Question -- (since I've had trouble understanding your prior posts) -- what caused the "slight brain damage" that you mentioned? You've probably explained it already but I didn't understand.


I love the quote from Blaise Pascal, just FYI. :-)






 May I end with a quote of : a French mathematician, physicist, inventor, writer and Catholic philosopher.
 BLAISE PASCAL
dear Friend: I didn't have time to write a short letter, so I wrote a long one instead.

http://en.wikipedia.org/wiki/Blaise_Pascal.....the quote's of him I did see  in the Dutch wiki translation




Title: Re: This may seem like a familar place.
Post by: demografx on June 30, 2012, 06:59:04 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on June 30, 2012, 07:01:29 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)


Title: Re: This may seem like a familar place.
Post by: demografx on June 30, 2012, 08:28:56 PM

(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)





Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familar place.
Post by: demografx on June 30, 2012, 08:30:57 PM


C'mon over, everyone, and post your thoughts, opinions, comments, and beefs!

Best,
Demo







Title: Re: This may seem like a familar place.
Post by: demografx on July 01, 2012, 07:43:50 AM
Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm
Title: Re: This may seem like a familar place.
Post by: tantalus on July 01, 2012, 11:50:38 AM
just like to add my day-thougts now.

feel sick and have a headache. did masturbate tonight (could not resist to 'work' on the "remains of the day".)
ok?...I accept the 'punishment' , but ]the headache worries me a lot. NEVER had headaches after org...[now 12 hours ago], nor did I have pois reactions bevore 48 hours.

I am wondering if my only once !! taken PROGESTERONE  a week ago  left me this 'gift'. Wil talk about this soon with Waldingers right hand........seems I am getting my first 'friends' here and on naked sc. To sick now to return mails now..........I did masturbate a second time to feel better because of my headache and because i am sick now enyway. "F.." masturbate  THE SYSTEM! >:(....buts not wise , I know. Repeated masturbation does worsen my pois sometimes ( I dont have this  clear [if its prolonging the time  with pois or just make me feel sicker at the moment].....ohhh guys, still too much to work out, even for a pois 'professional' like me. Many  critical!  ;) ;)questions   to ask to myself too :)

thank you all for support for my 'swirling around' on the forums  (and my stile of 'biting' back with a smile)  in general, and support of my  individual replies. :-*  go back now to TV "keeping up appearances".

p.s. tried to come in telephone contact to other Dutch member....but  he does not like live contacts with poisers . His good right.
not find an other yet to meet in Amsterdam or talk by telephone.  n.b. (I do Not have hidden agenda's . Just want to exchange pois related  info)
Title: Re: This may seem like a familar place.
Post by: Daveman on July 01, 2012, 05:15:39 PM
Tantalus,

I think repeated orgasms both increases the time and worsens the symptoms. At least for me.

The effect of the progesterone is most likely temporary. If progesterone can set 4 yrs of desensitizatin back to zero, it's not a very good cure.

I know how you feel. We always wonder about this new pain and that new sensation. "In POIS", we somehow feel as though it is something else, we feel bad and stupid for having yet again made ourselves suffer.

We can't punish ourselves. It is normal to masturbate, to need relief. And we can't think objectively while in POIS, or evaluate ourselves or what we might be going through.


Try niacin. It just might help you. I took it after eating (least effetive) without flush (usually a bad sign) and only suffered one day. Had to take 500mg though, which is normally quite a high dosage.

Title: Re: This may seem like a familar place.
Post by: tantalus on July 01, 2012, 05:48:03 PM
you just slipped under my fingers away but thanks for reacting so late at night still.
I will report about niacin here. I will also make a new appointment with my pois doctor. I am thinking of a  re-entry desentization much shorter as the one before. the cure was anyhow not finished. We see, first I will stop sex a week or so and then  try the niacin.
Title: Re: This may seem like a familar place.
Post by: demografx on July 01, 2012, 05:59:59 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: gingiskahn on July 02, 2012, 04:20:36 AM
Has anyone tried supplemental Testerone and Xatral ... has reduced head ache and other troubles
Title: Re: This may seem like a familar place.
Post by: tantalus on July 02, 2012, 05:03:27 AM
Mypois  agenda , my policy of being staying  here

I asked my allergist to call me back.
we must talk about how to continue . I  did stop with the desensitization 3 months ago. we were at 3 to 1 ( 1 part sperm 1 part water). The most nasty side effect became  to strong.

 Hyperacusis  ( sound causes pain in the inner ear) became stronger. Hyperacusis did first appear at 300 to 1 ( cant remember exact, ) fade away with repeating the same dilutions in 2 months. appeared again in the latest stage of the cure. I decided to stop temporally the desensitization  and just wait what would happen. Would the progress remain? Retrograde? I am in that process now. I better speak only with my allergist about my conclusions. In any way .....my pois is not stable....we have to wait how others react when they stop the cure before the end. I dont know yet how to go on, and will talk with him about the next options. Ii will also talk about my presence here, and what to share here,  and what not to share or to share privately with gained buddies. The bond and trust with our allergist versus prof. Waldinger is essential  for me.  Some things have to keep secret even in private mails, other wise our doctors would not tell us things they normally would not  tell to the average (pois ) patient. Its all experimental, so ....with you they will try something else as with me . And still a bigger group has to be treated exactly the same to get reverences.

A difficult process to balance  for us AND for the therapists  Therefore it is in my interest (and of us all) to be absolute loyal and confidentially with our therapist. some times we have to hide something for the other patients in general.

I proved to be loyal since 2004.  dont regret. Except for being not here earlier, nobody did forbid me that, but it would not have  stimulated the trust to tell me everything they knew. So I want to keep it so. If i might not awnser some questions or stay vague in future, its because of that status i want to keep.  

I dont have time now to add forgotten  commas etc. will review my English later.
so, that where my thoughts today.

and yours? please ad or add? (neither is corrected by the spelling correction) your thoughts here.  Sad?
uncertain about your therapy?
Did you buy something luxury to be happy in spite of pois? Share !
Did you dream?
Regret? ::)
You are proud of something? ;D


Tell here. I am listening too. :) :)      
Title: Re: This may seem like a familar place.
Post by: demografx on July 02, 2012, 08:46:41 AM
Has anyone tried supplemental Testerone ...

If you mean testosterone, it cured my POIS.

But anyone interested should ask their doctor about fertility risks.
Title: Re: This may seem like a familar place.
Post by: Stef on July 02, 2012, 12:52:11 PM
Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm


Demo -- this is FASCINATING!!!!!
Title: Re: This may seem like a familar place.
Post by: tantalus on July 02, 2012, 04:28:36 PM
                                                      CertainlyPois did write me :

A good amount of us have been waiting for a dr Waldinger patient, Tantalus,  so you should be getting lots of questions.  Dr waldinger being busy has not been able to answer lots of our questions.This is a good group, we are bonded by figuring out pois.
You can answer my questions in the "familiar feel" section am sure others are curious about the same questions. YOu can use my name to.
Any extradetail will be great about your treatment.

"I will answer your questions soon here. at the moment my allergist reads my posts here. To kill me off or to correct or to encourage me ...
                                                     Wile i wait for the final count down, i continue  writing here. "
                                                                     Til tomorrow  " Certainly Pois "
                                                                            yours sincerely , Tantalus

                                                                          
Title: Re: This may seem like a familar place.
Post by: tantalus on July 02, 2012, 05:27:24 PM
                questions  CertainlyPois    answers Tantalus
                                              ....we agreed to bring them in the open for discussion


>My desensitization is going, am not sure if it is helping or not.

well, mines is going too, And I despair sometimes too. Shall we sit together on the rivers of Babylon and cry? ;D I could indeed sometimes cry and I did a lot....but let us keep making jokes about our torture too  being here together could bring us energy to go on .
see my (temporally adhoc) answer on naked scientist to .....FIDALGO 30/6/00.04 hours.

 > I get dreams about sex that keeps my pois going.

Well, dear chap, the Oracle of Delphi could not said this much more vague, or?   ::)
do you mean : you dream the  cure is  never going to work?
do you mean : the cure makes you dream intenser about sex?

But sorry, this is interesting: I did experience something just like that . As side effect of my desenti...sessions I got each time verry strong sexual fantasies and arousals. I hated that, because shooting would or could? make me longer recoffering from the injection, or falsify the stimulus given to the body by the injection the day before. But, there was no escape .The  day after the injection  I had more energy as other days.  But , because n I had an high ( no pois but  in contrary much more energy as normally ) my dreams and day fantasies became also more sexual loaded as normally. This again made me masturbating at night to get rid of this temptation thoughts or dreams. The regained energy we get from the effect of the cure-reaction itself ,  brings our suppressed lust back!!

This brings another difficulty we have to face during the cure.  The process of balancing how often we ejaculate  between the injection and the one that comes next. I supposed Our body will need a rest to re coffer. Get stable again.  But then we like to know all ( I suppose) how good the body can deal with the next ejaculate.  Nobody knows yet , the amount of ejaculates is wise to have. I had to experiment myself too.  If  I did it to often , I had to much pois to know the difference of  having pois  as result of the injection only .So, it seemed my not wise to masturbate to often in between the injections.  
 Others say ......its ok  to masturbate during the re-coffer phase after injection.    Find your own way in that , I tried to resist during recoffery . but maybe I have been too 'holy'' *

If the cure is done more fast as in your case , with only 1 or 2 weeks between the sessions, it even brings more question marks, how we should  behave.  There is in that case, less time to see how the body reacts in comparing the pois before .
This means me have to masturbate by system not by 'lust of the moment'.     DIFFICULT!

I hated the moments I did masturbated without SYSTEM!.......because of the dreams/night fantasies when I was awake still.

you wil get more lust during treatment if you like or not. This is a paradox of the cure itself . You suffer from the injections, need to acclimatise but unwillingly trigger  your pois  because you must fill the next bottle with sperm for next treatment.......and must try not to shoot inbetween the 4 weeks  or otherwise you can not monitor the difference of living without pois!!

 This whole circle of  try about s  to get the hang of a system that gives us an idea of our progress is to much without an masturbation plan how absurd this even  may sound.  I did have one and was so able to see the progress.  This did force me to get unwillingly a 'controlfreak' of my own lust. ...................do you wonder why I choose TANTALUSS as nickname?

......I have been in purgatory state l 4 years. Its up en down and back and forth and ......gradually you find out the pois is less worse as the time before. This is why we need a 4  weeks in between the sessions. so we can experiment and re-coffer from it to be strong enough to face the next session.
BOYS....please get it ....a diary is essential to compare results with other poisers.

 >Am overweight and vitamind D is low like yours and i dont know if that is keeping me from fully getting healed or not.

getting to a normal vit D 'stage'is essential!!! do this first to treatment. It will cooperate with the cure.

>I have been doing desensitization for about 10months should i be expecting big improvements yet or should i wait to second year.  I went from 1;40000 to 1;5 in about 9 months.

tell me first what happened when you did get 800 to 1 .
most people feel something around that status  .......but I will not tell here to not  prejudge your memory.
so be first more specific time is not essential. the dillution is!
you are to vague. Did you have setbacks? and did they inject you always with the same dilution, or did they step back sometimes?
Seems you did not do a diary ( dont hit me 8) ).....whithout that its impossible to predict the next step to aspect.. Please document your process from now on dear readers , who get treated next. Whithout diary no objective results to compare for next generation.

>My semen is not fresh when i get shot, it is refegirated.

I did the same ...IT is told to me that  refrigerated it would led to stronger effect.
BUTT....I did read here [where?**] the opposite claim.....this is very annoying not to say irritating.
I will check this for you..  I choose for the strongest effect , if it might be opposite ...no wonder
it did not the job 100%. Especially because I did go so extremely slow. In your case it matters not so much if it would tend to be the soft approach, because it would be sublimated by the speed of going to 1 to 1 .

I check this with Waldinger c.s. its essential  we speak here not in 2 tongues.  

* to  'holy' and as result maybe not cured enough, because the body did not get bad enough stimuluses.....shit ...nobody knows til now.
 ** ...I check it out
Title: Re: This may seem like a familar place.
Post by: Ccconfucius on July 02, 2012, 09:44:16 PM
The dreams  have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction.  I do have a diary it is just in a different section of forum.

Right now i go every week, when did you start  going once a month.  
Title: Re: This may seem like a familar place.
Post by: demografx on July 03, 2012, 12:50:51 AM
Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm


Demo -- this is FASCINATING!!!!!

Thank you, Stef!
Title: Re: This may seem like a familar place.
Post by: tantalus on July 03, 2012, 07:20:34 AM
The dreams  have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction.  I do have a diary it is just in a different section of forum.

Right now i go every week, when did you start  going once a month.  


Hi, thank you for your trust to share more. I puzzled a lot about your words. "the dreams actually give me pois"

So, now we come to my big hangup here[ no biographies to refer to]

I do not know your age, but if you are much younger as me   (I am >45), I suppose , you have not only more dreams , but even more wet dreams as me.  I believe this is more likely to give you pois. I can Imagen this is a big problem, because we have no control about that.  

 Resisting doing  'it'. Will bring you more fantasies of course, if this is for me the case, this must for a younger person much more.
Another hangup: The stimulus that in nessecary to   shoot, is getting less and less the more I delay to have sex. This might be for all of us.  Masturbating  have to be very careful .Do also not  supress it to much, otherwise It drives you  crazy and than you lose self control and you ejaculate . 

Yes,  I needed to  get 3 times one or two steps back in desentiz.

I did go every week 4 times --------every 14 days a half year------- every 3 weeks 2 years?      the rest 4 weekly . Sometimes we repaeted the same dillution. there is nobody yet that has been treated so long and in such long distances. AsIi did write elsewhere they had a good reason in my case.  

 I did like to answer you asap. But I think I did not say much.



Title: Re: This may seem like a familar place.
Post by: Ccconfucius on July 03, 2012, 02:48:26 PM
The dreams  have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction.  I do have a diary it is just in a different section of forum.

Right now i go every week, when did you start  going once a month.  


Hi, thank you for your trust to share more. I puzzled a lot about your words. "the dreams actually give me pois"

So, now we come to my big hangup here[ no biographies to refer to]

I do not know your age, but if you are much younger as me   (I am >45), I suppose , you have not only more dreams , but even more wet dreams as me.  I believe this is more likely to give you pois. I can Imagen this is a big problem, because we have no control about that.  

 Resisting doing  'it'. Will bring you more fantasies of course, if this is for me the case, this must for a younger person much more.
I have learned to ban all porno out of my house to not get in temptation.  The stimulus that makes me  shoot, is getting less and less the more  delay to have sex. This might be for all of us.   i have to be very careful not to supress it to much, otherwise It drives me crazy and than I go to quick.

yes i needed to  get 3 times one or two steps back in desentiz.

I did go every week 4 times every 14 days a half year every 3 weeks 2 years. rest 4 weekly . sometimes we repaeted the same dillution. there isnobody yet that has been treated so long and in such long distances. As i did write elsewhere they had a good reason in my case.  

 I did like to answer you asap. But I think I did not say much.

I am to tired now to go on writing. dont feel satisfied with my answers . Ii will continue and re edit this tonight.





you answered a lot by giving me your schedule, am right now every two weeks, i will stick with that for a while now.

When did you start noticing big improvements, is it the two year mark like in dr waldingers paper.
Title: Re: This may seem like a familar place.
Post by: tantalus on July 03, 2012, 03:47:49 PM
Hi family,  It is maybe good news  for us all to know when senior p.o.i.s. specialists show regular  interest in the forums too. We can only guess if they  would come here in disguise by their own initiative..

Yesterday evening I asked one of Waldingers staff  specialists (which I needed to confess my sneeky  progesteron excursion, and to know how to proceed desensitization) to scan and screen this forum and naked scientists too.

 This to prevent informationgaps.  Also to prevent  a too big nomansland between patients with and whithout university trained  therapists Although this highly specialized people have almost no live after work, he/she  did read a part of his evening here . I will not be his/her  postman. But may bye I hear indirect  impressions, question marks later on which I am supported  to share.    I suggested he/she  could also maybe share here anyway  some advice, or correct to high expectations regarding self medication, the fact he can do this by choice as 'user' will give him protection for to much attention. Otherwise curiosity could kill the cat.  Since I did write myself here I might get his/her/their positive/negative feedback about my own content here too. I wait, shiver, and drink thea,  :-X Gynostemma in my case.     http://en.wikipedia.org/wiki/Gynostemma_pentaphyllum

Title: Re: This may seem like a familar place.
Post by: tantalus on July 04, 2012, 08:45:43 AM
GERMAN visitor here?         NEDERLANDER?         English?


Komme gerne mit dich in telefonischer verbindung. Zweks  pois unterhaltung einfuehrung.

Ik mis een nederlands maatje,  om door te spreken, wat in engels te moeilijk is. En voor wederzijdse ondersteuning.
woon in Amsterdam. Ben al sinds 2004 patient van prof Waldinger.

Like to have and to be apois related  telephone buddy. english writing (handicapt) is exremely tiring and can say things better in Words
We could skipe or telephone
Title: Re: This may seem like a familar place.
Post by: Starsky on July 04, 2012, 01:34:56 PM
Tantalus, ich würde gerne mit dir skypen. Schreib mir einfach dann eine PM.
Title: Re: This may seem like a familar place.
Post by: demografx on July 04, 2012, 03:17:12 PM
Let's Cure POIS. Now.

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Make "POIS Cured!"
the Feature Presentation - not...


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Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)

Title: Re: This may seem like a familar place.
Post by: demografx on July 04, 2012, 03:18:40 PM



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Title: Re: This may seem like a familar place.
Post by: Prancer on July 05, 2012, 11:40:18 PM
Hi all - GoingCrazy, Vincent, observercenter, Daveman, nordnurse, all other POIS sufferers here, and a special hello to demografx,

My name is Ryan. I've had POIS since I was about 14; I'm 23 now. (Before that I did notice after each orgasm that I felt some fatigue, but my symptoms were not nearly severe enough that I could call it POIS.) My POIS is 90% cognitive, and the rest is mostly strong fatigue. My symptoms are: difficulty thinking, memory problems, trouble finding the right words, itchy scalp corresponding to foggy thinking, insomnia, occasional severe headache, racing thoughts, possible OCD, anxiety, social withdrawal, extreme frustration and irritability, general discomfort.  I've lived in South Florida my whole life (though it's possible I could be moving out of FL and north at the end of the year). I did receive an accidental electrical shock in August '03, and for a long time I thought that is what was causing my symptoms. The shock was not strong enough to seriously injure me. I have since concluded that my POIS was not caused by the jolt, and I think that my POIS might have developed anyway.

Even though I'm new here, I've been following the forums for over a year now. I read through a lot of the information (not all 700+ pages word for word yet though). Perhaps what fascinates me the most is Animus' posts about his cure. I share so many symptoms with what he had before his cure, and even though I do not know what causes POIS, I also have a slight feeling that it has to do with the ejaculation of semen (regeneration theory). I can recall the very few times in the past I had a dry ejaculation for whatever reason, and I had very little POIS symptoms. I do not know if this is because of an allergy or something else, but I, like a few people, think it might have something to do with the body not liking the fact that semen has just been lost. Maybe, like others have said, the act of replenishing the semen is too taxing on the body. A few things that help my POIS are: 1) GOOD NIGHT'S SLEEP, 2) not ejaculating for a long while , 3) physical pain (I know it sounds really strange, but when I am injured in POIS, such as from a small skin burn or insect bite, I can usually think a little more clearly, almost like it "wakes me up"). 4) staying well hydrated. Using niacin seems to help me a little bit, but I'm still unsure, and it's definitely not a 100% cure for me whether it works or not. One interesting thing I've tried and had some nice results from is actually applying strong pressure to the area couple inches behind the testicles while ejaculating. This has given me completely DRY orgasms and seems to help a lot in many instances, although a few times I still had POIS later on (maybe because of retrograde ejaculation). Also, I'm not sure if this is necessarily the healthiest thing to be trying, but it seemed to work for me, albeit with varying effectiveness. My guess is that this action squeezes the prostate, not allowing much semen to be ejaculated. That's one more reason why I also believe ejaculation of semen causes POIS, and not the orgasm itself.

By the way, I remember reading several months ago on these forums about a member stating that hot showers made his POIS worse. Well for me, this is also definitely a big YES! Hot showers feel awesome and make me so relaxed DURING the shower, but several minutes after I get out, my POIS usually becomes much worse, especially if I was in strong POIS to begin with. Mainly severe cognitive symptoms result from this. After a good night's sleep, the next morning I feel much better.

[sigh] So in summary, POIS is a heck of a thing to have! But I think it can and will be cured one day soon. I think this not only because of the few people that actually had theirs cured, but because of the strange transient nature of POIS. I even had a hunch my POIS could be cured before I knew about the word POIS, so much that one of my main goals I kept telling myself back then was to "cure this "imbalance" I thought I had. I thought my symptoms were the result of some kind of chemical imbalance in my head. Luckily, I found out that my earlier guess about it being able to be cured was correct.  That was a huge relief to me, and by far my favorite point that was made to me by reading through the forums. Thank you everyone!

Sorry for the long post. Hope to post again soon.
Title: Re: This may seem like a familar place.
Post by: Observer on July 06, 2012, 11:43:59 AM
A few things that help my POIS are: 1) GOOD NIGHT'S SLEEP, 2) not ejaculating for a long while , 3) physical pain (I know it sounds really strange, but when I am injured in POIS, such as from a small skin burn or insect bite, I can usually think a little more clearly, almost like it "wakes me up"). 4) staying well hydrated. Using niacin seems to help me a little bit, but I'm still unsure, and it's definitely not a 100% cure for me whether it works or not. 

Hi Prancer!. You are not the first one to report that physical pain improves POIS symptoms, i am sure that i´ve read in the other forum someone who was hardly hit in the big toe and he experienced an incredible relief. I believe this could be very well related to some neurotransmitters... It would be interesting to find this quote.

Welcome to the forum  :)
Title: Re: This may seem like a familar place.
Post by: tantalus on July 06, 2012, 02:46:29 PM
wow its weekend. Indulge yourselve and pamper yourself with flowers , choclate or compliments​...your worth it! We cannot share .e. between the selve and pois, but we can share LOVE.
Title: Re: This may seem like a familar place.
Post by: demografx on July 06, 2012, 07:32:28 PM
Prancer, welcome to the POIS Familiar Place! We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here!
  
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Please check your mail inbox for a complete list of POIS resources.


Welcome aboard!
Demografx and Daveman
Your Forum Moderators
Title: Re: This may seem like a familar place.
Post by: Daveman on July 07, 2012, 07:09:40 AM
Thanks! Hmm, that's very interesting. My girlfriend's dad is a doctor and she told him about my POIS a couple years ago (lol didn't want her to) and he said he has never heard of POIS before. But I also remember him mentioning something about the fact that pain makes my symptoms less severe as something worth looking into more. Maybe it is neurotransmitter-related somehow.

I think the body generates its own pain killers,, although maybe not as good as morphine (LOL).

I've noticed too if I have or get a cold during POIS, it sort of "takes over" the POIS somewhat. Instead of haveing a cold AND POIS, your just not sure which is which.

Don't get me wrong, I still insist that POIS is far worse than a cold. They don't compare on that level.

Title: Re: This may seem like a familar place.
Post by: demografx on July 07, 2012, 08:16:38 AM
I learned in my early POIS years, that I would catch cold if I ran around doing the same level of work as out-of-POIS.

I learned to slow down as soon as POIS started.
Title: Re: This may seem like a familar place.
Post by: Daveman on July 07, 2012, 10:07:18 AM
Come on everybody. Just because NSF wants to close us down is no reason to stop donating!!!


Our research grant program is as strong and meaningfull as always.

We've still got POIS. We still don't have a solution. We still need to have a definitive definition for POIS, no matter how we feel we might be
closing in on a cause. We are laypeople, even if we find the cure, we won't have medical support until it comes officially through research.

We are frozen at $10,162. Do we not care?

Title: Re: This may seem like a familar place.
Post by: demografx on July 07, 2012, 01:30:48 PM


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Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


Title: Re: This may seem like a familar place.
Post by: demografx on July 07, 2012, 01:32:56 PM




What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)


Title: Re: This may seem like a familar place.
Post by: Prancer on July 08, 2012, 01:36:09 PM
Thank you demografx! I have a few questions for you if you don't mind.

Longterm, I believe that accumulated damage can easily occur. With over 30 years of POIS, I'm sure I would be a different person

That was back a few years ago before your cure. Do you now think POIS has left any permanent damage with you, or do you now feel like you did before POIS ever since your testosterone cure?
This might be a silly question, but if you were to completely stop taking testosterone do you think your POIS would come back? And lastly, does taking hot showers still affect you since your cure?

Thanks!
Title: Re: This may seem like a familar place.
Post by: demografx on July 08, 2012, 03:30:32 PM

Thank you demografx! I have a few questions for you if you don't mind.


Not at all.


Longterm, I believe that accumulated damage can easily occur. With over 30 years of POIS, I'm sure I would be a different person



That was back a few years ago before your cure. Do you now think POIS has left any permanent damage with you, or do you now feel like you did before POIS ever since your testosterone cure?


Excellent question, difficult answer. My guess is that some disturbance remains in cognitive performance (concentration, memory).


This might be a silly question, but if you were to completely stop taking testosterone do you think your POIS would come back?

 

I don't know and I am afraid to find out so I will not :)


And lastly, does taking hot showers still affect you since your cure?


Yes.


Thanks!


You're most welcome!
Title: Re: This may seem like a familar place.
Post by: Hoping on July 08, 2012, 04:12:50 PM
Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.

To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.

(see attached screen shot if you need additional direction)

Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential!   :)
Title: Re: This may seem like a familar place.
Post by: Stef on July 08, 2012, 04:56:41 PM
Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.

To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.

(see attached screen shot if you need additional direction)

Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential!   :)

Hoping,

Excellent suggestion!  I already have the "View the most recent posts on the forum" link bookmarked, and also rely on the RSS feed.

Of course, Daveman also set up several individual threads that can be added to or where new topics can be started.  (Ironically, I just started a new topic!)

Soon the entire poiscenter.com will be "a familiar place."

And it will likely become THE PLACE! :-)



Stef
Title: Re: This may seem like a familar place.
Post by: Daveman on July 08, 2012, 06:39:12 PM
Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.

To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.

(see attached screen shot if you need additional direction)

Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential!   :)

Thank you Hoping. Also another feature we have is an RSS link:
http://poiscenter.com/forums/?action=.xml;type=atom

If you copy this link into any RSS reader (Outlook and many EMail programs have RSS readers too), you will get all the latest posts sent to you just like EMails with an link included to the forums post's link.

It's real handy!
Title: Re: This may seem like a familar place.
Post by: demografx on July 08, 2012, 11:15:18 PM


Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)





Title: Re: This may seem like a familar place.
Post by: Stef on July 09, 2012, 04:21:24 PM


Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)


LOL!

You can do it, Demo!!!!!

Stef






Title: Re: This may seem like a familar place.
Post by: demografx on July 09, 2012, 10:59:39 PM
There I go again, listening to a woman's Siren Call again.

That's how I got POIS in the first place!

:)
Title: Re: This may seem like a familar place.
Post by: demografx on July 09, 2012, 11:02:34 PM


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Title: Re: This may seem like a familar place.
Post by: demografx on July 09, 2012, 11:03:33 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)



Title: Re: This may seem like a familar place.
Post by: Daveman on July 10, 2012, 11:01:37 AM
Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.

To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.

(see attached screen shot if you need additional direction)

Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential!   :)


Hi Hoping,

I appreciate very much your input. Poiscenter was formed precisely to try to organize the topics, making it easier not only for POISers but for researchers alike to follow given topics, without them being lost in a long string of posts, maybe never to be seen again.

But we have a mini-crisis right now. We are being restricted more and more at NSF, to the point that it is becoming very difficult to accomplish the very important things we need to accomplish. We need to GET OUT OF THERE, bluntly put. We need an area that is OURs, which this (poiscenter) is. Nobody can tell us what we are allowed to do or say here it is  OURS. If someone needs to talk about alternative remedies, the CAN, without being called a jerk.

We also vey much NEED to promote the research campaign, which we can’t do over there.

BUT One problem many POISers have, is  directly related to the “disease”. Many of us have attentional deficit, it often requires heavy concentration (for a POISer) to do anything new. A change over, from NSF to HERE is a big  deal. So the Familiar Place is an attempt to give them a place to make an easier transition.

We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space.
As Hoping says though, with just a little effort, you can set up your configuration either with RSS or using the new posts link, and try to help us maintain a distributed format, without losing your familiar feel of free flow of thought.

As always, us POISers, once we DO make a change and learn a new way, we usually find it very useful. Ask Demo about his new RSS link??

Title: Re: This may seem like a familar place.
Post by: demografx on July 10, 2012, 07:01:44 PM
Daveman writes, "ask demografx about his RSS feed".

Daveman, you are compassionate! I have now been waterboarded, er, awarded a Doctorate in SmartfoneRSS !

Dave, are we in the '90's tech era yet??
Title: Re: This may seem like a familar place.
Post by: demografx on July 10, 2012, 10:11:20 PM
Hoping, if this will reassure you, my intention is 100% in line with Daveman's, as he writes, "We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space."
Title: Re: This may seem like a familar place.
Post by: demografx on July 12, 2012, 01:29:34 PM
Re-printed from POIS Naked Science Forum  today:


My Dear Fellow POIS-Sufferers,

I've decided to formally step down from moderating this [Naked Science] forum.

It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
 
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers.  Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator.  I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.

You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com.  There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.  

Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also!  It's a great forum -- you can actually find information easily through specific threads,  instead of trying to read through some 700 pages of posts.

Best wishes to everyone!


Your friend,
demografx

Title: Re: This may seem like a familar place.
Post by: Daveman on July 12, 2012, 02:57:46 PM
Re-printed from POIS Naked Science Forum  today:


My Dear Fellow POIS-Sufferers,

I've decided to formally step down from moderating this [Naked Science] forum.

It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
 
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers.  Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator.  I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.

You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com.  There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.  

Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also!  It's a great forum -- you can actually find information easily through specific threads,  instead of trying to read through some 700 pages of posts.

Best wishes to everyone!


Your friend,
demografx



I'm very very sorry it had to be that way Demo, but I'm with you 150%.

Look at the advances you speak of in your post above, all within the last year. It took 4 yrs to generate the first 1,000,000 page views and only one year to generate the last 900,000.

Now when we are moving and most visible, they cut the ground out from under us. And it was from the very activities that were moving us that we were “Banned”.

More than ever we need to have a free environment to do what must be done, to have POIS officially, scientifically and medically recognized, to find a cure and to get the word out to as many sufferers as possible.

Only with research was willow bark extract converted into aspirin. Now, the whole world has access.

Together, all of us here on the forum will work with you to find the cure.

Thanks for getting us here Demo, to where we are now and where we will be very soon. POIS free.


Title: Re: This may seem like a familar place.
Post by: demografx on July 12, 2012, 11:08:50 PM

Mighty fine and powerful words, Daveman.

Thank you ever so much.


Title: Re: This may seem like a familar place.
Post by: demografx on July 13, 2012, 01:56:23 AM
(http://3.bp.blogspot.com/-IoZ0sOXl-vg/TxBbc9vr73I/AAAAAAAACIw/0I0cF92M48g/s1600/happy_friday_13th.jpg)
Title: Re: This may seem like a familar place.
Post by: tantalus on July 13, 2012, 01:19:53 PM
as an exception this  reply here on family feel topic because most new users come here too.

Recommendation? about NIACIN START
Dear Daveman or other Niacin avatars. Maybe its a good idea to write a manual for beginners somewhere  on pois center with everything to know about starting to use Niacin  for the first time,for new users like me. Or start a new topic "starters guide to niacin" We  will find the more guideline info about Niacin or Niacin-amide much more easy then, and are also able to skip al discussions beyond that theme for  later to read. It also prevents missing necessary info, because info about the first trial of niacin and experiences users had as they started, is spread over to much different topics.  

for me...I had to read so much, I forgot the most practical things to know for starting and how often and how long continuing the medication during the pois period after ejaculation.  ASAP.
[/color]

Title: Re: This may seem like a familar place.
Post by: Ccconfucius on July 13, 2012, 02:23:48 PM
if vitamin b12 talk picks up here this are my results.

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml
Title: Re: This may seem like a familar place.
Post by: tantalus on July 14, 2012, 07:33:16 AM
NIACIN ......I did discoffer* the search engine to read all niacin related topics..there are 86 replies !! [ to give the total 'picture' for beginners  for starting whitouth to much contradicting advises how to use during the pois days......  and how often....... and when exactly, etc  /color]

I do not like to ask here unnessecary questions already askt /answered, so i read them all before I come back here to ask my
questions. Daveman did give verry good  practical info for start , but i like to integrate the average meaning off other senior replies too. Daveman please wait replying here  til I come back here. 

* spelling-control put a red line here but does not give any clue why. ;>)
Title: Re: This may seem like a familar place.
Post by: demografx on July 15, 2012, 05:22:36 PM
Welcome to the Familiar Place thread of PoisCenter.com ! We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here.    
(http://www.graphicsgrotto.com/glittergraphics/comments/welcome/images/gcwelcome11.gif)

**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- or another forum member - - go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain.)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here.


Here are some POIS resources which may be helpful to you:

Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos)   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/)  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CCconfucius"!

Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 4th button to your right! (http://www.POISCenter.com/forums/index.php)

Our alternate POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our 5-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


POIS Research Studies available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

To send a Private Message, click on "My Messages" at the top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "


(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)


It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)

And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.




Title: Re: This may seem like a familar place.
Post by: demografx on July 15, 2012, 05:24:58 PM

if vitamin b12 talk picks up here this are my results.

My vitamin b12 and folic acid came out good.

726                out of     211 - 946 pg/ml
15.4                 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml


Thanks for posting your results, Cert!
Title: Re: This may seem like a familar place.
Post by: demografx on July 19, 2012, 12:52:14 PM

Let's Cure POIS. Now.

(http://markarmstrongillustration.files.wordpress.com/2011/10/feature_presentation.gif)

Make "POIS Cured!"
the Feature Presentation - not...


(http://vegasfamilyevents.com/wp-content/uploads/2012/04/The-Avengers-movie-review-2012.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)


Title: Re: This may seem like a familar place.
Post by: demografx on July 20, 2012, 10:30:46 PM

(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,272.00 $10,302.00 raised    
THANK YOU FOR THE $30 TODAY!!!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)






Title: Re: This may seem like a familar place.
Post by: Stef on July 21, 2012, 05:00:35 PM
Hi All --

Someone made the first new donation yesterday to your research fund, for the month of July.   (This is in addition to the two monthly, automatic donations that come in from two forum members.).

Thank you for acknowledging him, Demo -- I hope he's seen it!!!!!

Your indiegogo crowd-sourcing campaign will bring in funding -- definitely!!! --> BUT YOUR HELP --> EACH OF YOU --> WILL BE NEEDED TO MAKE IT A REAL SUCCESS!!!

Every $ is precious!

Stef

Title: Re: This may seem like a familar place.
Post by: demografx on July 22, 2012, 01:54:32 AM

(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: tantalus on July 22, 2012, 04:10:35 AM
yes he has seen it. :) its quarterly year donation,so each 3 months. maybe the donation site can be adapted to this.
Please other users may I ignite , encourage you all to donate too? ::)It takes a view minutes, but is so worthwile for us all :-* :-*
Title: Re: This may seem like a familar place.
Post by: tantalus on July 22, 2012, 04:13:13 AM
soon i will post here my first  NIACIN experiences.
Title: Re: This may seem like a familar place.
Post by: demografx on July 22, 2012, 08:08:38 AM
yes he has seen it. :) its quarterly year donation,so each 3 months. maybe the donation site can be adapted to this.
Please other users may I ignite , encourage you all to donate too? ::)It takes a view minutes, but is so worthwile for us all :-* :-*

THANK YOU, TANTALUS!
Title: Re: This may seem like a familar place.
Post by: demografx on July 22, 2012, 06:53:10 PM



(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E


 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: Ccconfucius on July 25, 2012, 05:40:55 PM
anybody interested in doing lit review on what has helped to find something useful.  we will do search using google scholar instead of websites.
something we can do while waiting for reasearch.
Title: "Medical Mavericks"
Post by: Stef on July 25, 2012, 06:55:39 PM
Hi All,

The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!


FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities.  If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.

Copied and pasted from the online medical journal, The Scientist, July 1, 2012:

"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.

After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.

Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.

If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.

Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'

At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.

It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).

'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.

But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'

Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."


So -- Keep doing your research (carefully and safely)!!  And keep posting about it!!  You never know from where answers will spring forth!

Stef
Title: Re: This may seem like a familar place.
Post by: demografx on July 26, 2012, 11:27:12 PM
Thank you, Stef! :)
Title: Re: This may seem like a familar place.
Post by: demografx on July 28, 2012, 04:13:29 PM

   (http://www.poiscenter.com/newsletters/NL-6.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
 
Title: Re: This may seem like a familar place.
Post by: demografx on July 28, 2012, 04:27:14 PM

Folks, as they say, it's complicated having two forums and having to repeat!

We have to unite under one forum, and THIS one is ours.

The other one is starting to restrict us. It is a forum that is read by women and children and they generally don't like sexual content.

They have let it go, but there are those who would prefer NOT to have a POIS thread over there.

We can't modify code, do back ups, add chats or enhance it. It is restricted to one single thread.

We are our own bosses here, we have freedom of movement and capacity do build and create.

Please unite over here.

The days of NSF are passing.

Thank you.




Thank you, Daveman!!
Demo




Title: Re: This may seem like a familar place.
Post by: demografx on July 30, 2012, 05:35:06 PM


   (http://www.poiscenter.com/newsletters/NL-6.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
 

Title: Re: This may seem like a familar place.
Post by: tantalus on July 31, 2012, 06:51:24 PM
just a short Hi to all. I have been quiet for a week. Have some very personal letters to write to my doctors, so no much  time for the forum as before. i got a verry friendly letter from member Ali, in which he apologises fornot been here so long and therefore never seen my private mail. This kind of PM's  make me feel warmly welcomed. indeed the familiar feel. Well guys ALI is back on the forum. Welcome ALI!  :-*...........My allergist is on holiday . The last time we discussed the forum. I asked him questions you did asked here, bur never got sufficient replies. Later one I will write his answers here.  About Niacin....he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself.  So would self stimulated pain  do also.

This brings me to the question whether  sadomasochistic sex would sometimes  help lowering the pois . Intriguing question , dont you agree?
Well, boringly I dont have SM experiences so I can not tell if it might influence pois postive. BUT !!! I did read a post on this forum subject??, i which a person claimed he did have less pois effect when he stimulates pain after the orgasm. [forgive me if i did read or quote wrong] This seems to state my theoretical guess. In my sneakiest fantasies, i see you all ironing your balls after today ;) i will wait till others do the experiment. ;D  

I have now very different ideas about the so called  'flagellantes' [monks who whipped themselves for getting bonus points in heaven}, maybe they just had pois , and wanted to have just more fun  without the cause and effect spiral'. ::)

I have tried 2 times Niacin now. 100mg and 150 mg . Ye,s it DOES have effect. Don't go into details now. Must repeat the same circumstances first a view times.
One of the first astonishing observations is ....NO RUNNING NOSE after 50 80 minutes after ejaculating in both sessions !. STRANGE!! The second time i used niacin i did do it wrong. So,...... the other Niacine sessions  must be repeated first. Also I had more times orgasms the days after I used a dosage, its not convincing then to compare he two sessions in terms of pois relieve.      

Will be continued.
Title: Re: "Medical Mavericks"
Post by: lauracostis on August 01, 2012, 05:04:32 PM
Hi All,

The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!


FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities.  If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.

Copied and pasted from the online medical journal, The Scientist, July 1, 2012:

"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.

After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.

Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.

If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.

Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'

At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.

It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).

'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.

But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'

Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."


So -- Keep doing your research (carefully and safely)!!  And keep posting about it!!  You never know from where answers will spring forth!

Stef
very interesting to read, my father died of ALS. 
Title: Re: Medical Mavericks/ALS
Post by: Stef on August 01, 2012, 05:58:35 PM
lauracostis,

I am soooooo sorry to hear that your dad died of this horrific disease!  Please accept my heartfelt condolences -- I really do mean that, regardless of how long ago this might have happened.

ALS is a MONSTER...I cannot even begin to imagine what your dad's illness was like for you and your family (and of course, for him).  My husband and I knew two people who died from it, and have been involved in the ALS Society's fund raisers for the past three years.

You're likely familiar with the online community, Patients Like Me

For the benefit of others reading this, Patients Like Me was started by three MIT engineers in 2004. One of them had a 29-year-old brother with ALS -- and they wanted to connect with other ALS sufferers while also building "a health data-sharing platform" for ALS  patients -- collect all the research into one place (sound familiar?). 

That brother eventually died of ALS, but Patients Like Me was continued, and now serves patients with many different conditions.  It's an excellent site, in my opinion.

At any rate, lauracostis, I'm truly sorry about your dad.

Stef
Title: Re: This may seem like a familar place.
Post by: demografx on August 01, 2012, 06:53:01 PM
Laurac, hi, great to see you again :)
Title: Re: This may seem like a familar place.
Post by: demografx on August 02, 2012, 05:41:09 PM

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Title: Re: This may seem like a familar place.
Post by: amijgoro on August 03, 2012, 07:26:05 AM
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.
Title: Re: This may seem like a familar place.
Post by: Daveman on August 03, 2012, 07:58:31 AM
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.


You would probably be a perfect candidate for the below:
http://poiscenter.com/forums/index.php?topic=468.0

Do what you can to give it a try. The regime is a little complex, but the thread indicated simplifies it as much as possible. It's WORTH it to be free.

What  your doctor says makes a lot of sense. If I get retrograde ejaculation, my POIS is a lot worse. Anything that "backs up" the pressure during the orgasm
can make it worse.

There's GOOD potential for the vitamin regime mentioned. It even works for those who haven't had success with niacin.

Good luck.
Title: Re: This may seem like a familar place.
Post by: Daveman on August 03, 2012, 09:00:24 AM
Tantalus,

Your allergist says:

"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."

We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0

The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.

I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.

Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!

Title: Re: This may seem like a familar place.
Post by: fidalgo on August 03, 2012, 10:15:16 AM
Tantalus,

Your allergist says:

"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."

We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0

The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.

I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.

Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!



The only time I have sucess with niacin I didn't have the flush. So, I think it's not the flush that help POIS, but the niacin itself...
Title: Re: This may seem like a familar place.
Post by: Daveman on August 03, 2012, 10:46:23 AM


The only time I have sucess with niacin I didn't have the flush. So, I think it's not the flush that help POIS, but the niacin itself...

Yes, I agree completely. It's sort of complicated to explain, but it seems that the flush, most times, is just "THE INDICATOR", that you have had enough niacin.

If the timing and conditions are more or less like we have established, then the flush usually indicates that you have taken the required quantity of niacin to be protected. However if for instance you have eaten soon before taking the niacin, you must take more, and the niacin delays in entering the system. Under those conditions I have been "protected" even though I ddin't get a flush. Also if you take a lot of niacin on a completely empty stomach, the flush comes fast and strong. If yo have the orgasm too quickly, you'll probably find that the  niacin hasn't had time to do it's magic, and even though you had a good flush, you are not "protected".

So there are exceptions, and clearly  it ISN'T the flush that protects, but the niacin.

That too goes against what the allergist thinks.


Title: Re: This may seem like a familar place.
Post by: demografx on August 03, 2012, 01:30:50 PM
Does anyone take Niaspan? I do, daily. It's 500 mg niacin extended release tablets. But my testosterone regimen works very well for my POIS, so my niacin is taken for other conditions. Just thought I'd post it for others to know about niacin-extended-release availability.
Title: Re: This may seem like a familar place.
Post by: rock27 on August 03, 2012, 03:52:02 PM
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.


My shutter is weak as well. I have posted this before and got replies that I was not the only one, i don't know how to fix it though. Try antihistamine to relieve symptoms, though some sites claim that antihistamines weaken the shutter.
Title: Re: This may seem like a familar place.
Post by: Ccconfucius on August 03, 2012, 08:53:23 PM
could the weak shutter be from overmasturbation.  I think i have week shutter to. when i pee i see clear oily liquid in water, it looks like putting oil in water.

This problem gradually happend to me, it is not something i started out with having.

Title: Re: This may seem like a familar place.
Post by: Observer on August 04, 2012, 03:17:32 PM
It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.
Title: Re: This may seem like a familar place.
Post by: Daveman on August 04, 2012, 04:06:10 PM
It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.

As you know, I don't have much POIS now, but I DO notice, that if I go for a little more than 10 days, that some symptoms start coming back. I attribute this to simple assimilation of sperm by the body, which has been building up, with no place to go.

The body starts to dispose of it, and I start to get more symptoms. If I take niacin and have sex, everything resets to "hunky dorry"

Title: Re: This may seem like a familar place.
Post by: demografx on August 06, 2012, 09:33:12 AM

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Title: Re: This may seem like a familar place.
Post by: Stef on August 06, 2012, 10:28:00 PM
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.


Amigoro --

Has your physician made any suggestions about retrograde ejaculation??

Stef
Title: Re: This may seem like a familar place.
Post by: Daveman on August 07, 2012, 07:43:05 AM
Hi again, 

Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough. 
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I can't take feeling like this every day anymore! 
Help regarding treatment would be most welcome.


Amigoro --

Has your physician made any suggestions about retrograde ejaculation??

Stef


Sounds almost operable
Title: Re: This may seem like a familiar place.
Post by: amijgoro on August 08, 2012, 09:44:48 AM
The discussion with my urologyst about retrograde ejaculation was pretty blunt. When he mentioned the possibility of semen escaping into the bladder I immidiatley tried to get more information out of him but the kind doc didn't want to go off topic and there wasn't much time left so it ended there. When I got home I imidiatly started researching about it and this is mainly what I've found:

http://www.mayoclinic.com/health/retrograde-ejaculation/DS00913/DSECTION=treatments-and-drugs

This website shared with us info about possible treatment for retrograde ejaculation. After reading it I went straight to my local pharmacy to buy medication in order to help with the problem. One of the meds I baught was sudafed which is a decongestant medication that contains Psuedoephedrine, a component which will tighten the sphincter. Once taking it I had very bad brain fog and depression that went away after a few hours. Not pleasant (which is why I posted this in the first place). But most importantly, the effect of the Psuedoephedrine worked and made the non stop problem magically go away for a short while. I stopped taking it the next day because the brain fog repeated it's self. I went back to the pharmacy and got a drug called paramol That contains Psuedoephedrine in a lower dasage and chlorpheneramine. This seems to be working for me for the time being (a few days but does not get rid of the problem completely) and I have to take it 4 times a day.

From my undersatanding of what I have, semen is definitely the culprit here. It's the semen in the bladder that's causing the symptomes. So my guess is I'm creating semen that's harmful to my body that can be contained in the bladder and/ or maybe be alergic to it. It's a good guess to me.
I'm going to make another apointment with a urologyst to discuss the matter in depth. In the meantime I'm gonna do more research on it. God willing we will all find relief and self peace.
Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 10:47:03 AM
amijgoro, thank you for sharing your detailed experience about this. I never had good luck with urologists. Maybe I expected too much from them. I assumed they were experts about anything going on "down there."

My cure eventually came through working with an endocrinologist.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 08, 2012, 11:03:16 AM
amijgoro, thank you for sharing your detailed experience about this. I never had good luck with urologists. Maybe I expected too much from them. I assumed they were experts about anything going on "down there."

My cure eventually came through working with an endocrinologist.

Endocrinologists are much more holistic in their thinking than most other doctors as diseases related to the over or underproduction of hormones, for whatever reason, can have symptoms that appear anywhere. You've got to remember that a doctor only knows how to treat certain things. If a disease is outside their understanding or treatment capabilities then they're unlikely to be interested. If you can get your doctor to refer you to an endocrinologist for your POIS symptoms it's a lot better than being referred to a shrink :)
Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 11:52:26 AM
kurtosis, as soon as you said "refer to shrink" I went "ouch!!!" ;D
Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 11:58:21 AM
I didn't wait to get referred to an endocrinogist. I barged right in!

30+ years of POIS agony, I had zero patience .
Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 08, 2012, 12:21:47 PM
I didn't wait to get referred to an endocrinogist. I barged right in!

30+ years of POIS agony, I had zero patience .

In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D
Title: Re: This may seem like a familiar place.
Post by: aalkaff on August 08, 2012, 12:53:50 PM
I didn't wait to get referred to an endocrinogist. I barged right in!

30+ years of POIS agony, I had zero patience .

In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D

FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!

There, just wanted to get that off my chest.

A few months ago, I went on a search for an endocrinologist who'd be willing to work with me and supervise my treatment attempts. I was a bit surprised to discover that we've got a whole lot of jerks in Dubai with 'Dr.' before their names. The areas of government health and government education are perhaps the worst over here, with private institutions being about average. We spent money on a lot of things but missed the mark in those two critical areas. Anyway, governement/society problems aside, I don't want to give up, and I'll restart the search, especially because I don't know when my employer's patience will run out, what with the weekly one-to-two sick days off I keep taking.

So, is an endocrinologist the best doc for the job? And have you guys explored online correspondence with one? For a fee even? (A great business idea for doctors :D)
Title: Re: This may seem like a familiar place.
Post by: aalkaff on August 08, 2012, 01:08:11 PM
It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.

I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.

As you know, I don't have much POIS now, but I DO notice, that if I go for a little more than 10 days, that some symptoms start coming back. I attribute this to simple assimilation of sperm by the body, which has been building up, with no place to go.

The body starts to dispose of it, and I start to get more symptoms. If I take niacin and have sex, everything resets to "hunky dorry"



I'm not sure if I've got the same cause(s), but I get POIS or at least POIS-like symptoms when I feel I'm 'loaded'. For me, that's usually on the third or fourth day since the last O. Yeah, I know--I've got problems abstaining from any sexual activity for more than a couple of days. A lot of will power and self-trickery is required, which are scarce in my case, because of POIS--Catch-22.

Hmm, I should probably search for posts on how to reduce libido and/or sperm production. Without surgery. I hope.
Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 02:11:22 PM
I didn't wait to get referred to an endocrinogist. I barged right in!

30+ years of POIS agony, I had zero patience .

In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D

That's horrible!

Thanks for reminding me that I'm LUCKY that I could "just barge in" to a specialist's office. Here where I live you can do that but you might pay astronomical "out of network" charges!

The referral system in some locales is terrible.
Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 02:31:53 PM

FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!



I CONCUR!!!


Title: Re: This may seem like a familiar place.
Post by: demografx on August 08, 2012, 06:16:30 PM
The above is an example of freedom of speech that relieves some of my tension as well as Ali's.

Prohibited at the other forum.
Title: Re: This may seem like a familar place.
Post by: demografx on August 08, 2012, 06:18:31 PM

(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,272.00 $10,802.00 raised    
THANK YOU TO THE RETURNING MONTHLY DONOR!!!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)









Title: Re: This may seem like a familiar place.
Post by: demografx on August 09, 2012, 09:36:05 AM

Is an endocrinologist the best doc for the job?


In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).

I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.

My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.

I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 09, 2012, 12:16:39 PM

Is an endocrinologist the best doc for the job?


In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).

I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.

My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.

I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.

There's another great reason why university endocrinologists are useful to talk to about POIS or any similar disease involving fatigue and cognitive symptoms with mysterious origins. They're expected to publish papers and will actually have a vested interest in treating your illness and finding out what might be causing it. It might seem odd but most doctors have a professional requirement to make a best-judgement diagnosis but not a diagnosis that would withstand scrutiny in a peer review journal. For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
Title: Re: This may seem like a familiar place.
Post by: aalkaff on August 09, 2012, 01:52:58 PM

Is an endocrinologist the best doc for the job?


In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).

I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.

My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.

I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.

Wow, I never thought of a university MD. I'm not sure we have those here :P And about the testerone patches/gel, I think they must be prescribed over here--not available over the counter.
Title: Re: This may seem like a familiar place.
Post by: aalkaff on August 09, 2012, 01:55:00 PM
...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"

LOL! :D
Title: Re: This may seem like a familiar place.
Post by: demografx on August 09, 2012, 06:47:20 PM
...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"

LOL! :D

ditto lol!!
Title: Re: This may seem like a familiar place.
Post by: demografx on August 09, 2012, 06:52:40 PM

Is an endocrinologist the best doc for the job?


In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).

I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.

My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.

I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.

Wow, I never thought of a university MD. I'm not sure we have those here :P And about the testerone patches/gel, I think they must be prescribed over here--not available over the counter.


Here, patches and gel must also be prescribed, never over the counter. I take 10 mg daily  (2 patches) of Androderm (Watson Pharma is the manufacturer).
Title: Re: This may seem like a familiar place.
Post by: demografx on August 09, 2012, 07:09:54 PM

So, is an endocrinologist the best doc for the job? And have you guys explored online correspondence with one? For a fee even? (A great business idea for doctors :D)


This is NOT an endorsement, but I see that endocrinology practitioners do sell their advice online. This is just one random example I pulled from a Google search :
http://www.liveperson.com/experts/health-medicine/specialty-medicine/endocrinology/

Best wishes! Your creativity, Ali, will overcome the hurdles of Dubai I'm sure.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 10, 2012, 05:51:17 AM
...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"

LOL! :D

ditto lol!!

Hey, if you still have a sense of humour after nearly 2 decades of POIS, you can survive anything right? :D
Title: Re: This may seem like a familiar place.
Post by: demografx on August 10, 2012, 12:54:14 PM
...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"

LOL! :D

ditto lol!!

Hey, if you still have a sense of humour after nearly 2 decades of POIS, you can survive anything right? :D
     
<wild applause>

kurtosis, you speak the truth! After 3 decades, I kept my humor regardless of whether anyone thought I was funny  :)
Title: Re: This may seem like a familiar place.
Post by: Daveman on August 10, 2012, 08:57:45 PM
Who cares!!?? Just too much silence.

www.indiegogo.com/research-for-POIS
Title: Re: This may seem like a familiar place.
Post by: Observer on August 11, 2012, 02:36:08 AM
Who cares!!?? Just too much silence.

www.indiegogo.com/research-for-POIS

I am @Observercenter on Twitter. Daveman has tweeted Ricky Martin. I think we should tweet celebrities/media. If only one of them pick up the story it would be really really great, we need to expand our campaign. To get the word out is the most difficult task.

Also, thanks to Tom for commenting in the campaing. Tom, you make a difference, we should follow your example.
Title: Re: This may seem like a familiar place.
Post by: Daveman on August 11, 2012, 07:17:15 AM
That's right!, Thanks Observer.

We've worked hard to raise $10,000, and there's $23,500 more needed!

Why not look for help to raise it. But we need to get the word out.

Each one take 30 minutes per day, that's all just 30 minutes per day to do some networking.

How ever. Twitter, Facebook, firends, family.

At Twitter we are @IPOIS, @demografx1, @observercenter, @ridgefieldmom18.

Follow us, follow and tweet your local celebs. anyone you know who might listen.

Now is the time so we don't have to wait another 2 yrs to raise the rest!
Title: Re: This may seem like a familiar place.
Post by: demografx on August 11, 2012, 01:02:04 PM
Quoted:

"It's getting confusing alright, particularly with discussions on 2 websites. "

That's the reason for concentrating it into only ONE.

THIS one. it's OURs. Our software, OUR owners who dedicate ONLY to POIS and aren't interested in ANY other monetary / commercial
priorities.

THIS ONE, that let's us publicize our cause.

Why divide the energy? Why complicate the discussions, why repeat, and why resist?

The movement started there, but it has outgrown the medium.

NSF may be a great science forum, but we can do everything that can be done over there (for POIS) and more. LOTs more.


Title: Re: This may seem like a familar place.
Post by: demografx on August 13, 2012, 10:41:43 AM
(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,272.00 $11,002.00 raised!    
THANK YOU FOR THE $200 GIFT FROM OUR ***REPEAT*** DONOR!!!! :) :)
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
Title: Re: This may seem like a familiar place.
Post by: tantalus on August 14, 2012, 03:28:34 PM
Daveman is not online unfortionally.....

I am in the mood for a funtrial!!

so...: does enybody know how often I can ejaculate after taken niacin and between howmanny hours?
(22:22:09) tantalus: does niacin protect me still after 3 or 6 hours?
(22:22:39) tantalus: so may i have more as only one time an orgasm?
(22:23:38) tantalus: and whot is the maximum time after taken niacine to have sex again?

dont let me wait to long ;D
   
Title: Re: This may seem like a familiar place.
Post by: tantalus on August 15, 2012, 02:54:28 AM
Observertold me 3 orgasms are oke within 3 hours.
I did today my 3th niacin experiment. After the first 2 orgasms I did not get a running nose, after the 3th I got my nose running, not so long , about 20 minutes. Feel a bit worried if 3 times were too much to handle for the body to prevent pois. I wil know more tomorrow. I used 150 or 200 mg this time. I cannot remember exact. since I was distracted from attention. First I swallowed 100 mg and after an halfhour or  hour the other tablet.

Sorry i did not react to replies of Daveman and an other one about my reply end juli ( my allergist). Because of holiday of myself and him too. I will see him Friday again.

Title: Re: This may seem like a familiar place.
Post by: Daveman on August 15, 2012, 06:10:32 AM
OK, but remember, niacin isn't necessarily a cure. If it helps you that's fantastic, although it probably won't let you have unlimited sex without problems.

Like I say, I'm a very happy man just to have one POIS free orgasm per week!! For me, more than that is stretching it.

Find your limit and what you can be happy with.

Title: Re: This may seem like a familiar place.
Post by: Daveman on August 15, 2012, 07:14:30 AM
Who hasn't been here yet???!!!

(http://www.poiscenter.com/images/widget_172083.png) (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)

GO (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)

If nothing else, but to have a look at what we are doing.... TRYING to do.

We NEED ALL YOUR SUPPORT. Unless you want to raise all the money yourselves!
Title: Re: This may seem like a familiar place.
Post by: Observer on August 15, 2012, 07:31:33 AM
Observertold me 3 orgasms are oke within 3 hours.



Well, that could be risky  ;D. I think even 2 are ok.
Title: Re: This may seem like a familiar place.
Post by: tantalus on August 15, 2012, 08:38:49 AM
Observertold me 3 orgasms are oke within 3 hours.



Well, that could be risky  ;D. I think even 2 are ok.

Yes, I did interpret your answer in your private email  maybye to much as a yes to my question. Actually, you did indeed write 'more as once is ok. '  This means indeed not  not nececarely 3 times!!. I admit I have taken a risk by interpreting  your answer to  broad.
a bit stupid, but ...if you had to wait so long for letting go your lust as I did befor I did read about (Davemans) relieve . ............2 times could by  not enough for you to maybe to cash the credits of postponed 'high's'.
 
Title: Re: This may seem like a familiar place.
Post by: Daveman on August 15, 2012, 03:13:08 PM
Here are some stats on the Indiegogo Campaign, with 54 days left!

The visitor to referrals ratio is about 165% ( 1 3/4 visitor per referral)
The donations ration is 0.36% Very poor (per visitor) 0.59% (per referral)

We receive on the average:
$0.09 per visitor
$0.15 per referral.

We need 66,667 referrals!

One twitter referral can produce retweets. I have made 20 tweets (using the indiegogo Tweet button and editing to send the tweet to some famous person),
and had 119 referrals. So I'm getting an average of about 6 retweets per referral.

I can send the stats on a regular basis, but we need you all to make the effort.

Can you afford 30 minutes per day? For POIS? With 30 minutes per day we can do A LOT!!




Title: Re: This may seem like a familiar place.
Post by: demografx on August 15, 2012, 10:31:12 PM
Just a reminder: please keep in mind that all private emails must remain private.

Any private discussion should never be publicly posted without permission from the email recipient(s).

Thanks, everyone, for your cooperation.
Title: Re: This may seem like a familiar place.
Post by: demografx on August 15, 2012, 10:32:35 PM
Who hasn't been here yet???!!!

(http://www.poiscenter.com/images/widget_172083.png) (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)

GO (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)

If nothing else, but to have a look at what we are doing.... TRYING to do.

We NEED ALL YOUR SUPPORT. Unless you want to raise all the money yourselves!

Title: Re: This may seem like a familiar place.
Post by: Daveman on August 16, 2012, 07:54:11 AM
Guys, I hate to be a nuisance, but I'm really disappointed in our effort to try and raise funds for Research.

We have an indiegogo campaign running, 1 wk of the 8 have already passed and we have a grand total of $25!! And that came from someone on the forum!!

We need participation! There have been a total of 5 comments on the site, almost ALL of which the  organizing team has made. These comments do two things: 1) help to let potential donors what POIS is and how we suffer, and 2) raise our indiegogo level putting us more to the forefront.

For heaven's sake, we have POIS and it is terrible. Can't we take a little time to try to find a formal and final solution to this thing. If we can raise funds from outside, there are less funds we have to raise ourselves.
What does it take to light a fire under you all?

This is for you. Please, try something easy like 30 minutes per day. Follow the twitter campaign, post comments on www.indiegogo.com/research-for-POIS .

Please get involved. We only have 7 wks left.

Thank you!

Title: Re: This may seem like a familiar place.
Post by: Daveman on August 16, 2012, 10:44:47 AM
I see there have been several more comments on the indiegogo site at www.indiegogo.com/research-for-POIS .

These are very useful for helping potential donor understand how miserable this is!

Thank you for those who post there!!

Title: Re: This may seem like a familiar place.
Post by: demografx on August 16, 2012, 05:23:59 PM

I see there have been several more comments on the indiegogo site at www.indiegogo.com/research-for-POIS .

These are very useful for helping potential donor understand how miserable this is!

Thank you for those who post there!!



Yes, very nice to see your comments, everyone! Keep them coming!
Title: Re: This may seem like a familiar place.
Post by: fidalgo on August 17, 2012, 08:34:37 AM
I discovered this forum three months ago and the POIS disease in the same time. Reading this forum is changing a lot my opinion of my disease. When I was alone were very diffcult to know waht have or not relation with this disease.

I make this introduction because now I'm with doubt when my POIS really start. My strong POIS, which worst a lot my life quality, start when I was 20 with all the symptoms but, before that, I already had some kind of small POIS, with discomfort in the eyes, a bit tired, a small mental confusion, after each ejaculation and lasting some hours. I think that small POIS stars when I was 14/15 years old.

Some days ago I was think that I might had another symptoms of POIS in that time. I never realize that symptoms could be relation with POIS. I don?t know by sure the age (14-15-16) but in some time appeares some ringworm in my genital region. With that came a strong mental confusion when I was sleeping, a lot very bad dreams and I start to have a lot o noturnal emission. I never give a shir fot that but the ringworm was extreme related with the mental confusion in the sleep. In that time I never thought that this was a relation with ejaculation, but maybe. It was in that time that my POIS start, I think... I don't know if the ringworm have relation...
Title: Re: This may seem like a familiar place.
Post by: demografx on August 17, 2012, 08:47:07 AM
fidalgo, thank you for sharing your experience!
Title: Re: This may seem like a familiar place.
Post by: poisioq on August 17, 2012, 11:44:20 AM
I make this introduction because now I'm with doubt when my POIS really start. My strong POIS, which worst a lot my life quality, start when I was 20 with all the symptoms but, before that, I already had some kind of small POIS, with discomfort in the eyes, a bit tired, a small mental confusion, after each ejaculation and lasting some hours. I think that small POIS stars when I was 14/15 years old.

My history is very similar. at 13 i was not yet e but had very good libido. at 14/15 i started loosing my libido. at 21 appeared all  the POIS symptoms
Title: Re: This may seem like a familar place.
Post by: demografx on August 17, 2012, 09:29:40 PM

(http://www.wagingpeace.org/images/support/donation_image_main.jpg)

$9,270.00 $9,350.00 $10,272.00
$11,062.00 raised!
 
THANK YOU FOR THE $60 TODAY!!!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)



Title: Re: This may seem like a familiar place.
Post by: demografx on August 17, 2012, 11:07:45 PM
2 tidbits-

"Scientists Closer to Birth Control Pill for Men"

http://abcnews.go.com/m/story?id=17028071



"Walnuts Linked To Improved Sperm Health: Study"

http://www.rttnews.com/1950242/walnuts-linked-to-improved-sperm-health-study.aspx?type=hnr&utm_source=google&utm_campaign=sitemap



Title: Re: This may seem like a familiar place.
Post by: demografx on August 20, 2012, 04:25:33 PM
Today, POIScenter.com and our INDIEGOGO CAMPAIGN both appear in The Wall Street Journal's...

(http://optimalep.com/wp-content/uploads/2012/04/Market-Watch.jpg)



http://www.marketwatch.com/story/poiscentercom-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder-2012-08-20

AND WE ALSO APPEAR IN.......................


(https://lh3.googleusercontent.com/-0w9rdQAVeTM/UCv4Wg5V7zI/AAAAAAAABdA/l_2jko3Bm80/Breaking%2BNews%2BStory%2BGraphic.jpg)


http://finance.7online.com/abclocal.wabc/news/read?GUID=22072642


AND WE ALSO APPEAR IN.......................


(http://www.wealthlift.com/blog/wp-content/uploads/2012/05/yahooFinance-logo.jpg)


http://finance.yahoo.com/news/poiscenter-com-announces-fundraising-effort-194314351.html

AND WE ALSO APPEAR IN.......................

(http://a0.twimg.com/profile_images/1213095644/CBS-eye-white-bg.jpg) CBS NEWS

(http://ndwebfiles.marketwire.com/logos/338.gif)

(http://blog.rsanyc.net/property-rights/wp-content/uploads/2012/04/SF_Gate_LOGO.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on August 20, 2012, 11:38:33 PM
See Google results below for poiscenter-in-the-news.

http://www.google.com/search?q=poiscenter.com+announces&ie=UTF-8&oe=UTF-8&hl=en&client=safari

Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 21, 2012, 03:26:48 AM
See Google results below for poiscenter-in-the-news.

http://www.google.com/search?q=poiscenter.com+announces&ie=UTF-8&oe=UTF-8&hl=en&client=safari



fantastic, well done.
Title: Re: This may seem like a familiar place.
Post by: demografx on August 21, 2012, 12:52:55 PM
Thanks, kurtosis!!
Title: Re: This may seem like a familiar place.
Post by: demografx on August 21, 2012, 02:40:36 PM
CURRENT PUBLICITY PUSH

Daveman and I contributed $200 to our current major publicity effort. Total charge is $415 out-of-pocket charges. (Daveman's outrageous consulting demand of $87,000 per hour will be ignored! ;D)

It would be greatly appreciated if someone(s) could contribute the remaining $215. Thank you very much.

Daveman
Demo
Title: Re: This may seem like a familiar place.
Post by: demografx on August 21, 2012, 09:54:24 PM
Our Press Release.

Email it to anyone who can help us!
http://www.marketwire.com/press-release/poiscentercom-announces-fundraising-effort-combat-rare-severely-debilitating-sexual-1692576.htm
Title: Re: This may seem like a familiar place.
Post by: demografx on August 22, 2012, 01:38:36 PM
We appear in
(http://www.copyvigilante.com/wp-content/uploads/2012/03/msnbc.com-logo.jpg)

http://www.msnbc.msn.com/id/48728692

Title: Re: This may seem like a familiar place.
Post by: Daveman on August 23, 2012, 11:03:44 AM
Again my friends in POIS, I have to make my voice heard.

We went to a lot of trouble to put together a fairly comprehensive campaign on Indiegogo.com, to help to raise funds for our research. There’s a small team of us who have dedicated a fair bit of our time to TRY to make it happen. The more we raise outside, the less we have to raise ourselves!

But so far, after 14 days, we have $85, $60 of which one of the team-members “mother-in-law” put in. We are 1/3 into our allowed time of 60 days! So at this rate we will get maybe $200 from the campaign.

Why? Demo and I invested $415 into a publicity campaign, which there has been no offers to support, we have twitter going full time and facebook, BUT 5 PEOPLE CAN’T DO IT ALL. We can only reach so many people.

I know that not everybody can give money, but everybody CAN GIVE. It is very surprising what can be done with only 30 minutes per day, a little TV watching time. I feel bad that the dedicated few have to be abused and made to work or donate so much more because no one else wants to get involved.

I can only assume that you don’t believe in research, that you think, after 5 years of trying that this can be resolved with chat between us. Unless there is research, we won’t have the medical community and their cooperation behind us, one of your biggest complaints.

So do you think it is going to resolve itself? Or "Do you just NOT want to cure POIS?  Is that what this
is all about?"

Please help me understand!!
Title: Re: This may seem like a familiar place.
Post by: demografx on August 23, 2012, 12:09:49 PM
Thank you, Dave. I, too, would like to understand better where we are.

Are we a team?
Title: Re: This may seem like a familiar place.
Post by: demografx on August 23, 2012, 12:20:24 PM
iPhone users:

To get your RSS feed of POIScenter.com on your iphone, copy and paste this link into Safari - your Web browser:

Or just click now and bookmark it.

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Title: Re: This may seem like a familiar place.
Post by: demografx on August 23, 2012, 12:33:45 PM
Our Press Release. With embedded video ABC TV documentary on POIS

Email it to anyone who can help us!
http://www.marketwire.com/press-release/poiscentercom-announces-fundraising-effort-combat-rare-severely-debilitating-sexual-1692576.htm

Title: Re: This may seem like a familiar place.
Post by: lauracostis on August 23, 2012, 03:37:26 PM
TO Demo, Dave, and all the others that were involved in the campaign, I appreciate your efforts and all the time you guys put into this.  Your work has not gone unnoticed by me, Thank you all!
Title: Re: This may seem like a familiar place.
Post by: Nightingale on August 23, 2012, 03:50:40 PM
I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us.  I was not looking in this thread and I have totally been absent in giving feedback here!  You guys went through a lot to get this going, you at least should be getting feedback!

I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again.  I will write these letters!
Title: Re: This may seem like a familiar place.
Post by: Stef on August 23, 2012, 09:02:02 PM
I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us.  I was not looking in this thread and I have totally been absent in giving feedback here!  You guys went through a lot to get this going, you at least should be getting feedback!

I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again.  I will write these letters!

Nightingale,

You've gone through so much with psychiatric medications!  I'm so very sorry to hear that these medication reactions are an on-going problem.

I bet that if POIS weren't in the picture, you wouldn't need any of those meds! 

You and I spoke by phone once, over a year ago, and you were 100% with it!!!! I could not have been speaking with a more terrific, sweet, intelligent, "NORMAL"  person -- I remember that conversation vividly.

(Seriously speaking, I've had the opportunity to speak with some bona fide "oddballs" during my nursing career, both at  NORD and before working at NORD.  I once got a call from someone who wanted to know what to do -- she'd been abducted by aliens from outer space! Another couldn't stop eating toilet paper -- unused, unscented!)  There's nothing funny about any of it -- but THAT is mental illness.  THIS is POIS!

You were NOT odd in any way! Not in the slightest!

Please believe in yourself and stay the course. There will be an end to this POIS madness.

And go for it with those letters, once you're feeling better!!

Stef




Title: Re: This may seem like a familiar place.
Post by: demografx on August 23, 2012, 10:53:04 PM
TO Demo, Dave, and all the others that were involved in the campaign, I appreciate your efforts and all the time you guys put into this.  Your work has not gone unnoticed by me, Thank you all!

Thanks, laurac!!!!
Title: Re: This may seem like a familiar place.
Post by: kurtosis on August 24, 2012, 03:58:27 AM
Trying to get some twitter folks to RT a notice about it. I wish very much I could just write a cheque for this and get this research underway.
Title: Re: This may seem like a familiar place.
Post by: Daveman on August 24, 2012, 07:31:17 AM
Thanks, Nightingale, Laurac, Kurtosis, others.

It's good to get the feedback about what is being done, even the hardships and difficulties in getting responses.
It's all incentive to the rest of us to kick in as a team.

We're a team of 400+, LOTS of potential there.

Thanks
Title: Re: This may seem like a familiar place.
Post by: Daveman on August 24, 2012, 07:44:08 AM
I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us.  I was not looking in this thread and I have totally been absent in giving feedback here!  You guys went through a lot to get this going, you at least should be getting feedback!

I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again.  I will write these letters!

URLs and quotes from the news release (Demo has left a few on the board here and there) are great material to send to big corporations etc.

That is one of the best uses of news releases, to use them as seeds and evidence that we are involved and serious.

Title: Re: This may seem like a familiar place.
Post by: demografx on August 24, 2012, 05:49:10 PM
Newspaper example: POIScenter placement. (and hopefully dozens  more newspapers will bring us newbies/donors).


(http://www.lovesticks.com/images/photo_sac_bee_logo.jpg)


http://markets.financialcontent.com/mi.sacbee/news/read/22072642/POIScenter.com_Announces_Fundraising_Effort_to_Combat_Rare
Title: Re: This may seem like a familiar place.
Post by: demografx on August 24, 2012, 07:53:41 PM
Hey, guys, here's an EASY way to particpipate:

Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://www.topix.com/health/depression/2012/08/poiscenter-com-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder

JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS!

Invite 'em over!!

Thanks for trying!!!!!!!

Demo



Title: Re: This may seem like a familiar place.
Post by: demografx on August 26, 2012, 12:14:02 PM

FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!



I CONCUR!!!

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E            

(http://i858.photobucket.com/albums/ab143/demografx/0d0e0e35.jpg)
    


 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on August 26, 2012, 09:18:01 PM


Hey, guys, here's an EASY way to participate:

Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://m.topix.com/forum/health/depression/TJFPAV7PB9PRAO6FC

JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS! Invite them to POIScenter.com !

Thanks very much for trying!



Thanks again Observer for leading the way!

And thank you so much to lauracostis, Stefanie - aka nordnurse - Nightingale, Hoping, and kurtosis!

Title: Re: This may seem like a familiar place.
Post by: demografx on August 27, 2012, 01:09:40 AM
TO ALL OUR NEWCOMERS AND FRIENDS:
Let's Cure POIS. Now.


(http://www.theoink.net/index3_htm_files/now_appearing1.gif)

Make "POIS Cured!"
the Feature Presentation - not Arnold!


(http://collider.com/wp-content/uploads/expendables-2-movie-poster-arnold-schwarzenegger.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)

Title: Re: This may seem like a familiar place.
Post by: demografx on August 27, 2012, 08:06:19 AM

Hey, guys, here's an EASY way to participate:

Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://m.topix.com/forum/health/depression/TJFPAV7PB9PRAO6FC

JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS! Invite them to POIScenter.com !

Thanks very much for trying!



Thanks again Observer for leading the way!

And thank you so much to lauracostis, ridgefieldmom aka Our Very Own Stefanie - aka nordnurse - and Nightingale, Hoping, Kurtosis, and Fidalgo!




Title: Re: This may seem like a familiar place.
Post by: demografx on August 29, 2012, 01:43:00 AM
Topix.com statistics and demographics

(http://i858.photobucket.com/albums/ab143/demografx/AA3BD93F-1839-4DD8-9CE4-467C28060010-651-0000008B4BDBF2C8.jpg)


WEB TRAFFIC FOR JUL 29, 2012 - AUG 27, 2012

People per Month            12,876,211
Visits per Month             21,247,293
Online                             15,821,589   
Mobile Web                       5,425,703   
Page Views per Month   129,448,448
Online                              75,799,196   
Mobile Web                      53,649,252   
 
Mobile Web traffic is measured from web browsers on mobile devices, but not mobile applications.


Source: http://widget.quantcast.com/topix.com/traffic/mobileweb?country=US



Title: Re: This may seem like a familiar place.
Post by: demografx on August 29, 2012, 08:56:39 AM


Great going, guys, as you can see above, you might have reached some good numbers of people with all your posting at Topix.com!
Title: Re: This may seem like a familiar place.
Post by: Stef on September 02, 2012, 11:30:41 PM
Hi All!

A donation of $100 was made to the POIS research grant fund today.


But this is not about the donor.

This is about Daveman. It is clearly stated that the donation was made in Daveman's honor -- on behalf of his efforts to help another human being.

Without going into details, Daveman is using his innate ENGINEERING/SCIENTIFIC skills to help someone in the US who is suffering from a dreadful rare disorder. (This person does not have POIS).

Demo once described Daveman as an "architectural genius" --  he could not have used better descriptive words. Daveman is undertaking this very complex project essentially for free, knowing that the family has exhausted their bank account. He has already put a great deal of effort into this project (despite working very long hours during the week, serving as the head of a large household, and doing his best to keep http://poiscenter.com (http://poiscenter.com) running smoothly).

Most of you likely see Daveman as a no-nonsense, intelligent, often serious, sometimes very funny, computer-savvy individual.  And you've also likely noticed his stalwart dedication to raising funds for POIS research.

What may not always come through on the forum posts, but which I've recently had the privilege to witness, is Daveman's amazing generosity of spirit -- the greatest attribute that anyone can have!!  

He heard about a woman in the US who is struggling severely from a very rare condition, and is hoping that his engineering knowledge (my words here -- "unique engineering knowledge") -- might be able to help her climb out of some of the hell she's been living in.  He's now in the process of putting a very complex engineering project into action on her behalf. He's given her and her husband some realistic hope, where there was formerly only darkness and despair.

Daveman just very well may be able to do for her what various physicians and physical therapy specialists have not been able to do!

But even if Daveman's efforts don't ultimately help this woman, he will have shown that human kindness is very much alive and well, and that we are all part of the human family -- no matter how different our individual lives are and how far apart on this planet we live from each other.

So -- to reiterate -- this donation was made in honor of Daveman and his incredible generosity as a human being.

I'm guessing that he'll be very embarrassed to read this post! But I just could not let this this wonderful act of humanity -- by the creator of this wonderful forum -- pass without acknowledgement.


Stef


Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on September 03, 2012, 12:10:44 PM
Daveman proving his awesomeness again. 
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 03, 2012, 12:39:21 PM
WOW, I just saw this! Shucks Stef!!

I don't know how selfless it is, if it's successful it will be quite rewarding. It's rewarding anyways to work with people toward an end especially a difficult one, and see results, smiles, shining eyes!

And IT GOT ANOTHER DONATION, YAYYY!

Title: Re: This may seem like a familiar place.
Post by: Stef on September 03, 2012, 08:47:27 PM
WOW, I just saw this! Shucks Stef!!

I don't know how selfless it is, if it's successful it will be quite rewarding. It's rewarding anyways to work with people toward an end especially a difficult one, and see results, smiles, shining eyes!

And IT GOT ANOTHER DONATION, YAYYY!



Daveman, I hope I didn't embarrass you!

The effort -- and your intention to help -- is invaluable.  A price just can't be placed on it. 
 
Regarding this woman and her loving husband (who will move heaven and earth to help his wife) -- if your project is ultimately successful, you will have taken two human beings out of a dungeon

And yep -- it brought in your group's first new donation through NORD's website in about two months!!! (By the way, the donor has specifically requested anonymity.)

What goes around, comes around!

Stef



Title: Re: This may seem like a familiar place.
Post by: Observer on September 03, 2012, 09:53:13 PM
Daveman proving his awesomeness again.  
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!

Daveman rocks!!

PD: I will try to translate soon into Spanish the Multi-lingual description about POIS!
Title: Re: This may seem like a familiar place.
Post by: kurtosis on September 04, 2012, 02:49:51 AM
Daveman proving his awesomeness again.  
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!

Daveman rocks!!

PD: I will try to translate soon into Spanish the Multi-lingual description about POIS!

No need to be embarrassed Daveman. Credit where credit is due.
Title: Re: This may seem like a familiar place.
Post by: demografx on September 04, 2012, 10:56:45 AM

We need more research for sure and donations at the NORD fund. If we not make this happen, we can talk about it till we die. From what I read on the internet, allergy tests are somehow difficult to be conclusive, so I think we should focus on getting as many people on desensitization. If let's say 90% get cured we consider that as evidence. Problem is getting them on desensitization as most allergists won't start without conclusive evidence. Solution will be the research fund (and get advanced allergy tests done) and us going to allergists and hitting them with the Waldinger paper and also telling about the huge impact pois has on our life (it is not just sneezing a few times).


Well said for the need for research and donations, Rocky.
Title: Re: This may seem like a familiar place.
Post by: demografx on September 05, 2012, 06:25:15 PM

Let's Cure POIS. Now.



(http://whomurderedrobertwone.com/wp-content/uploads/2010/07/Feature-Presentation.png)

Let's make "THE DARK NIGHT (POIS) RISES (Cured)!"
the Feature Presentation - not..........


.......(http://upload.wikimedia.org/wikipedia/en/thumb/8/83/Dark_knight_rises_poster.jpg/220px-Dark_knight_rises_poster.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)





Title: Re: This may seem like a familiar place.
Post by: demografx on September 06, 2012, 07:03:49 AM
(http://www.kvie.org/support/images/button_donate_monthly.gif) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)<<<Just click on the sign <<<

We are all extremely grateful for the "steady base" that some of you are already providing to this POIS Grant Fund.

Very reassuring!

Thank you very, very much to our FREQUENT POIS RESEARCH CONTRIBUTORS!!!!!
Title: Re: This may seem like a familar place.
Post by: demografx on September 06, 2012, 10:11:43 PM
 ;D WOW! WE'RE OFF THIS CHART!! ;D

(http://walkercorporatelaw.com/wp-content/uploads/2011/06/fundraising.jpg)

$9,270.00 $9,350.00 $10,272.00
$11,862.00 raised!
 
THANK YOU FOR THE $50! Plus TWO (2) $100 DONATIONS - ONE IN HONOR OF DAVEMAN !!!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)




Title: Re: This may seem like a familiar place.
Post by: demografx on September 08, 2012, 08:57:47 AM
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!

$5.00? Yes!
$10.00? Yes!
$More? Yes!

*****EVERY***** DOLLAR COUNTS!!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on September 10, 2012, 12:30:35 AM
To anyone who sees SPAM:  PLEASE use the *"report to moderator" button!
                                                                                                                          
Thank you for keeping POIScenter.com a clean, safe environment.
                                                                                                              
                                                                                                              
                                                                                                                        
                                                                                                            
Daveman
Demografx


                                                                                                                                                                                                                 *
Title: Re: This may seem like a familiar place.
Post by: demografx on September 10, 2012, 09:53:39 AM
THANK YOU!!

FOR THE RECENT $50 DONATION!

AND THANK YOU FOR THE (2) $100 DONATIONS!

And one (of the (2) donations above) is in honor of Daveman!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on September 12, 2012, 12:48:05 AM
Q. What's the best thing about being an aging POISer?

A. Nocturnal emissions eventually stop.


(at least they finally did for this aging POISer)

Title: Re: This may seem like a familiar place.
Post by: demografx on September 13, 2012, 11:47:50 PM
THANK YOU!!

FOR *ANOTHER* $50 DONATION!
Title: Re: This may seem like a familiar place.
Post by: demografx on September 14, 2012, 11:11:56 PM
LEVITRA

This has helped my POIS since reporting about it on the POIS Forum in 2007.

It's been a mystery though. At one time, I thought it was my cure, then it stopped working - then combined with testosterone patches that I take 365 days/year for POIS - I know it helps, I just don't know the who where what why of it all. Sometimes it works before sex, sometimes it works after sex!

Looking forward to our research grant possibly exploring this expensive (NO insurance covers this Rx) drug - so if money is an issue, we're stuck with ordering from "foreign pharmacies". Dangerous IMHO .

Anyone have experience with Levitra, Viagra, or Cialis? (similar action drugs).
Title: Re: This may seem like a familiar place.
Post by: demografx on September 18, 2012, 09:05:16 PM
Interesting video

"Male Orgasmic Disorder"

http://www.youtube.com/watch?v=gOAIE7jC8SI&sns=em

Too much "psychological" orientation - but flexible enough about other medical treatments IMO .

Title: Re: This may seem like a familiar place.
Post by: Prancer on September 18, 2012, 09:46:49 PM
Interesting video

"Male Orgasmic Disorder"

http://www.youtube.com/watch?v=gOAIE7jC8SI&sns=em

Too much "psychological" orientation - but flexible enough about other medical treatments IMO .



Interesting video. At first I thought it was a parody. I have zero problem orgasming though, but I get the exact same frustration/melancholiness (if that's a word) after the orgasm, so I can sort of relate.
Title: Re: This may seem like a familiar place.
Post by: haidcat on September 20, 2012, 01:19:08 AM
Demo, in regards to the levitra, my thinking would be that its the vasodilator effects of the drug that helped you. More blood flow to muscles/brain maybe? Kurtosis could probably figure out why it worked
Title: Re: This may seem like a familiar place.
Post by: kurtosis on September 20, 2012, 04:04:14 AM
Demo, in regards to the levitra, my thinking would be that its the vasodilator effects of the drug that helped you. More blood flow to muscles/brain maybe? Kurtosis could probably figure out why it worked
I'm happy with your answer :)
If POIS is basically hyperadrenergic POTS that's not such a problem that we faint all the time but is a problem around an O then, yeah vasodilation effects are the most likely.
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 20, 2012, 05:40:21 AM
I´m not sure what Levitra is, would it be a sort of "Viagra"?

I have a question about Viagra. Would Viagra be incompatible with niacin. If one were to take the two together?
Title: Re: This may seem like a familiar place.
Post by: demografx on September 21, 2012, 11:31:45 AM
Daveman, as far as I know they're identical. Competing manufacturers.
Title: Re: This may seem like a familiar place.
Post by: demografx on September 21, 2012, 11:39:44 AM
My hunch/theory (just speaking for my POIS) is that the refractory period is somehow associated with POIS.

The faster the RATE of replenishment, the LESS POIS - and Levitra perhaps aids the process, thereby ameliorating the POIS - in my case from 80% to 90% and higher, with mood meds boosting me to 100.

Wish I were a clinician! I have no patience for diaries but what I'm telling you about is over many years experience. But not 100% consistent, so I don't plan on writing a book. ;D

I've heard the vasodilation explanation before, it makes sense. Wonder if vasodilation AND refractory rate are somehow both implicated? Not necessarily in tandem.
Title: Re: This may seem like a familiar place.
Post by: demografx on September 21, 2012, 08:21:33 PM
THANK YOU!!

FOR THE RECENT $400.00 DONATION!!!!!!!!
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 22, 2012, 06:48:49 AM
WOW $400!

That puts us well over $12,000, can you believe it?

That $400 must have hurt. One of us cares enough to go that far out. And I know, almost any amount hurts!

Perhaps not as much as POIS. POIS is continuous, or at best 50, 60% of the time. Even a monthly donation only hurts for a day, maybe 2.

Thank you Mr. Donor, and for all of those who have helped us get to $12,312. Come on, we're getting there! To freedom.

Title: Re: This may seem like a familiar place.
Post by: demografx on September 22, 2012, 12:58:53 PM
the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others

THANK YOU, CertainlyPOIS FOR THE $400.00 DONATION!
Title: Re: This may seem like a familiar place.
Post by: demografx on September 27, 2012, 09:17:51 PM
My 3 Hour Meeting Today with the celebrity actor, "Squiggy" of "LaVerne and Shirley" TV fame. He is  David L. Lander

Edit: David's website is http://DavidLLander.com/

Thank you CertainlyPOIS, Stefanie/nordnurse, Daveman, and others for encouraging me to do this!


(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)

The purpose of our meeting today was to re-acquaint (we were friends in HS days in New York when he was still David Landau.)

And to discuss POIS and similarities with David's experience with MS. He was most encouraging and was impressed that we raised over 1/3 of our goal without ever meeting each other.

IT TOOK DAVID 15 YEARS BEFORE HE WOULD "COME OUT" AND ADMIT HE HAD MS.

SOUND SIMILAR?


As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.

David L. Lander's memoir Fall Down Laughing chronicles his life story hiding multiple sclerosis from the public for 15 years. And it is F U N N Y !!!

Best known for playing "Squiggy" on the television hit "Laverne & Shirley", David L. Lander has appeared in dozens of television shows and feature films including Who Framed Roger Rabbit? and A League Of Their Own. Lander was honored by the National Sclerosis Society as their Ambassador of the Year in 2000.



Title: Re: This may seem like a familiar place.
Post by: Daveman on September 28, 2012, 06:30:22 AM
Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!

Title: Re: This may seem like a familiar place.
Post by: demografx on September 28, 2012, 07:39:13 AM
"coming out" might be painful, but the rewards, as Squiggy, Observercenter, nordnurse, and Daveman reported, can well be worth it.

I still refuse to tell anyone ;D ;D ;D ;D

Title: Re: This may seem like a familiar place.
Post by: kurtosis on September 28, 2012, 08:13:29 AM
Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!



The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 28, 2012, 08:36:40 AM
At work is a tough call, and each case would have to be carefully considered I think.

I'm going to start with the in laws and near family. I don't have the problem that they can accuse me of being lazy (with chores or whatever) and using POIS as an excuse.

We live with the in-laws (mother in law elderly sis-in-law single Mom). So they will now know every time we have sex. Will be able to "understand" the weird things we do to hide the niacin rituals, pre-sex fasting etc. etc. but it's a start.

I have to convince my wife now!!

Title: Re: This may seem like a familiar place.
Post by: Daveman on September 28, 2012, 09:24:58 AM
Wow another donation for $200 came in!!

I understand it came from someone who had already started an automatic $50 per month donation, so this is above and beyond!! Good Going! I can’t say how much it is appreciated, and the good that it will do.

We MAY be able to find a cure by ourselves, for most of us, but the fund will get it into the books and hands of doctors! Even if we do it ourselves, our small hard to find group will be the only ones to get it. With these donations, we will bring it to the medical community. We open the doors to ALL the POIS sufferes in the world.

Feel GOOD about your donation! You ARE doing something for ALL of us.

Thanks!

Title: Re: This may seem like a familiar place.
Post by: demografx on September 28, 2012, 03:32:15 PM
Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!



The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.

kurtosis, you have described the conflict superbly!

But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.

I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".

Lets look for the similarities, not the differences.

Title: Re: This may seem like a familiar place.
Post by: kurtosis on September 28, 2012, 04:54:47 PM
Thank you very much David Landau for this generous offer!

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!


The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.

Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract.  POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.

kurtosis, you have described the conflict superbly!

But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.

I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".

Lets look for the similarities, not the differences.


Oh absolutely, I'm not knocking the idea or getting support from a celebrity. Particularly not someone who has bravely dealt with a horrible illness and provided both humour and relief to other sufferers. That's not my intention at all. But we need to be careful before we consider "coming out" to people as POIS sufferers. There are many jobs that would immediately suspect your judgement was constantly impaired and that's the best case scenario where they believe this is a real illness and not a psychological fabrication. Whatever people say about "psychosomatic illnesses being real for the sufferer", they cannot get beyond their belief that the person is suffering from mental illness and thus all their reasoning is potentially faulty.

If they don't believe this is a real illness, they may assume some kind of nervous breakdown. So I think we should postpone the coming out to anybody except close family UNTIL we have an accepted diagnosis that means our sanity cannot be questioned when we say we have this disease.
Title: Re: This may seem like a familiar place.
Post by: demografx on September 28, 2012, 07:19:21 PM


Thanks, kurtosis!
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 28, 2012, 07:44:54 PM
I think this is where the real value of the research lies.

Once we are "defined" we are more like an MS patient and not a mental case

It makes it more official.

Title: Re: This may seem like a familiar place.
Post by: demografx on September 29, 2012, 01:06:14 AM
"Mental case"...yes, a perfect way to depict us in the eyes of "the blind professional"

Sheesh. The public will be slow to understand us. But yes, Dave, we need to get research into the hands of DOCTORS first!

Let the understandings begin! ;D
Title: Re: This may seem like a familiar place.
Post by: kurtosis on September 29, 2012, 04:58:01 AM
I think this is where the real value of the research lies.

Once we are "defined" we are more like an MS patient and not a mental case

It makes it more official.


Totally. I have 2 goals in life. 1) to be completely cured of this thing or at least so cured that I never have to worry about it again. 2) for the illness to be an accepted diagnosis in which case I can tell people that I have/had that and how I'm dealing with it. I'm happy to take that risk but only when I have a diagnosis I can point to. As it is, I could have anything from hypogonadism (seems unlikely) to hypothyroidism (seems more likely) to viral/bacterial/parasitic infection. And lots of stuff in between like genetic disorders in the synthesis of proteins. The problem is that any disease that affects homeostasis of hormones or neurotransmitters can appear the same.

If I get diagnosed with something (even if it's not specifically POIS) then that's positive . The only thing I know is that I have a gluten sensitivity which can be associated with thyroid problems as there's a huge chemical similarity between some of the thyroid tissue and one of the proteins in gluten. The idea is that your body may start off producing antibodies against gluten proteins but these may attack thyroid tissue producing a hypothyroid effect. Whether this could lead to the kind of problems we're seeing with POIS, I don't know. But for a disease to be rare, all it would take would be one problem that's compounded with another problem thats rare (a relative concept of course) and then you get weird symptoms.

POIS is an interesting name for this as it implies it's a syndrome. It may remain a syndrome without a clearly understood aetiology or, hopefully, it will progress to being a fully understood disease in which case the name would have to change. But progressing to the "disease" stage could be really difficult as that would mean that we have  clear understand of the causes of the disease, its mechanism of action and the physiological changes it produces. There is still some stigma  attached by doctors to syndromes (unfortunately as the name syndrome does not deny the physiological effects) but nobody is going to argue with a diagnosis of a disease. This may be a long road but I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.
Title: Re: This may seem like a familiar place.
Post by: Daveman on September 30, 2012, 10:51:28 AM
In light of all of this everybody, have a look at the Research Fund Total.

It was recently upped by $1000 in ONE donation! Congratulations to the donor who ever (s)he is and congratulations to the forum.

$1000 doesn't come easy! I can't express how much it means to see it come in.

$13,512. I remember when we worried if it would reach $2000!

Thank you everybody!

We need our name, the name of POIS or POID  :D (for disease!) on the board, and this will do it.

We will, one day, walk into the doctor's office and say, "I feel like CRAP after orgasm doc!", and he will say,
Ahhh yes, you have POIS, take one of these 2 times a day, and call me in 2 wks.

Title: Re: This may seem like a familiar place.
Post by: demografx on September 30, 2012, 02:35:30 PM

Beautifully said, Daveman! Thank you, $1,000 Donor!
Title: Re: This may seem like a familiar place.
Post by: demografx on September 30, 2012, 11:32:52 PM

I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.


kurtosis, this is exactly what has kept me involved with the forums since 2007.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 01, 2012, 12:02:40 AM
(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)

As a start, David is making available to you all for free: his 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.


I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)

One idea: use business address?
Another: use your initials only?
Another: use a box number?

Go through NORD? (nordnurse would have to approve this one)

Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.

The book will make you laugh at your own privacy issues.

Better than dying from them IMHO!! ;D ;D ;D ;D

Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 01, 2012, 10:22:50 AM

As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.


I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)

One idea: use business address?
Another: use your initials only?
Another: use a box number?

Go through NORD? (nordnurse would have to approve this one)

Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.

The book will make you laugh at your own privacy issues.

Better than dying from them IMHO!! ;D ;D ;D ;D

You could always setup a temporary PO Box number.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 01, 2012, 10:51:12 AM
Do you mean like at The UPS Store, where you can create a physical Postal "inbox" (with key to lock/unlock) for just one month?

Or did you mean the Post Office?

I also remember hearing that you can get mail addressed to you as "c/o General Delivery, Hartford, CT 06101" (your own city, state, zip)
Title: Re: This may seem like a familar place.
Post by: demografx on October 01, 2012, 11:12:57 AM

(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)

$9,270.00    $9,350.00    $10,272.00
$13,512.00 raised!
 
THANKS, $1,000 DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)

Title: Re: This may seem like a familiar place.
Post by: demografx on October 01, 2012, 11:57:47 AM
I presented the Selwyn Dexter study to my physician today: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/

She found it interesting and wrote me a prescription for a progesterone drug called norethindrone (the US version of norethisterone).  I also had labwork ordered for my thyroid, hormones and cortisol levels.  I'll post updates on each of these items as I get results.


I followed your exact same path, B_Daniel!

There was excitement at NSF for a while about T/P  (combo of progesterone and testosterone). So I became a guinea pig:
http://www.google.com/#hl=en&sclient=psy-ab&q=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&oq=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&gs_l=hp.3...3114.42163.0.42906.83.66.9.8.8.0.309.10527.0j52j9j1.62.0.les%3B..0.0...1c.1.GXbdK2yzm4U&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.&fp=acede1ef7df1b691&biw=1067&bih=441

My endo prescribed me norethindrone, but I QUIT AFTER 4 DAYS. Got pretty sick.

You might have a totally different reaction: I wish you the best!!!
Title: MONEY BOMB!
Post by: Daveman on October 01, 2012, 02:35:58 PM
The last donation of (http://dersamurai.files.wordpress.com/2012/06/1000-dollar-us-bill-front.jpg) was a sign of (http://upliftingchrist.files.wordpress.com/2012/06/faith-1.jpg) by someone who contacted me and said he was willing to cover an equal amount of all the donations that come in for the month of October!

So everybody, make your (http://projects.fit.edu/serra/Money.jpg) work for you!

If you make a donation between now and the 31st of October our "SPONSOR" will donate an equal amount.

So your donation of $10 NOW will have the impact of $20, $100 will mean a total of $200 and so on.

So come on everybody,MAKE IT COUNT!!

And a great applause for our "SPONSOR"!


(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)




Title: Re: This may seem like a familiar place.
Post by: Daveman on October 01, 2012, 03:25:45 PM
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 01, 2012, 09:20:09 PM
One excitement after another.

When it rains it pours.
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on October 01, 2012, 10:17:53 PM
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.


Nice work.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 02, 2012, 10:46:21 AM

As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.


Not true for me.

Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!


Finally to say, wonderful life after 7 years. 


Congratulations!
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 02, 2012, 11:50:56 AM

As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.


Not true for me.

Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!


Finally to say, wonderful life after 7 years. 


Congratulations!

I think what happens is that we THINK (really want) the medicines to work, so they seem to. And it depends so much on "chance". POIS has it's ups and downs, weather, amount of sleep, nutritional condition, so many factors, and so many of them we don't related directly to POIS, maybe because we don't take detailed notice of all the factors.

So one day, we have all the stars lined up, and by chance, also try some remedy. WOW, it seems to work! How many times have I said that! Then the bottoms falls out when the weather changes or some other factor that I haven't been keeping track of, changes.

Tests of remedies is complex! We can't realistically do it without a step by step protocol. Note all initial conditions, limit items being tested, not all changes  outside of the testing parameters, and then perhaps even do blind tests with cross-checks.

Sounds like a pain in the butt, and so that's why we don't dedicate a little more time to it. But we're just fooling ourselves if we don't.

The idea is not to be critical or reprimanding, but to bring attention to what it really take to do a test that has any use.

Your testosterone worked because it was administered and controlled by a doctor. You didn't just try it for the heck of it! Or if at least you did, it was still under the control of a doctor who could say, "today it didn't work because of such and such but lets change the dose a bit and keep it up for a bit..." or whatever. At least more control, and entered with a plan and evaluated with understanding.

"A success is not a success without the data and a failure is not a failure with the data!"

This would have to be our motto!



Title: Re: This may seem like a familiar place.
Post by: mellivora on October 02, 2012, 05:08:49 PM
IMPORTANT ANNOUNCEMENT!!

We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.

This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.

Please help us to find a solution to POIS. Your input here will benefit us all.

Thank you.

WOW! Grateful that Juan I.Martínez-Salamanca is interested in POIS. Thanks Daveman for the heads up. I THINK ITS ESSENTIAL THAT WE ALL COMPLETE THIS QUESTIONNAIRE. We can't bang on about wanting research if we don't partake in research opportunities when they are offered! A HAND HAS BEEN EXTENDED IN OUR DIRECTION, PLEASE DON'T MISS THIS OPPORTUNITY FOR YOURSELF AND FOR ALL OF US.
Title: Re: This may seem like a familiar place.
Post by: mellivora on October 02, 2012, 05:42:32 PM
Thanks to all for recent donations! The recent rise in funds is truly heartening and reflects the tireless hard work  and the various amazing outreach efforts there have been here lately 

Also...since I don't want to distract from my last post which quoted Daveman's message about Dr. Juan I.Martínez-Salamanca in Madrid, there now follows some repetition: please complete that questionnaire! ;)
Title: Re: This may seem like a familiar place.
Post by: Hoping on October 02, 2012, 09:21:36 PM
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.
Great news! I just filled it out.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 03, 2012, 03:27:15 AM
Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.

- Would it be possible to email or message everyone on the forum with a link to the survey?
- And would it be possible for these researchers to share their survey results with other researchers and the forum so we can get some definitive answers on what symptoms everyone is suffering from?  (at the minimum).

I can't see why anybody on the forum wouldn't so they should get a few hundred survey entries.
Title: Re: This may seem like a familiar place.
Post by: 0002ppdnuos on October 03, 2012, 04:50:12 AM
I just filled in the questionnaire.
Title: Re: This may seem like a familiar place.
Post by: poisioq on October 03, 2012, 06:08:13 AM
done
Title: Re: This may seem like a familiar place.
Post by: Observer on October 03, 2012, 07:01:37 AM
Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.


I´ve also filled the survey. I think we are at critical stage. We should move on decisively this month. If some of you had doubts about how much or when give money to our NORD fund, this is your moment to solve them. This wonderful sponsor has given us a very special opportunity to reach our objective before the end of this year. I think everyone should make some effort and give something - It does not matter the amount, but the willingness- to have a GOOD research done. And if you were having doubts to tell the POIS problem to anyone, you should do it now, so this people can also help us with a small donation... that will be multiplied by 2!!
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 03, 2012, 09:09:04 AM
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:

Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine

He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.

Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.

He has a survey at the following URL.

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ

We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very  much more benefit.
Great news! I just filled it out.

Thanks!!

Please everybody, take 3 minutes to fill out the form. This survey is on the Google system, user friendly, maybe easier to fill out than the one I programmed for us.

Don't know if you will think that it is too basic, but have patience. The Doctor knows what he needs, and there will be follow-up once we have a good base.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 03, 2012, 11:43:05 AM
Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.

- Would it be possible to email or message everyone on the forum with a link to the survey?
- And would it be possible for these researchers to share their survey results with other researchers and the forum so we can get some definitive answers on what symptoms everyone is suffering from?  (at the minimum).

I can't see why anybody on the forum wouldn't so they should get a few hundred survey entries.

Yes we will be Emailing the message to everyone. Up till now, we have been sending individual "messages", but right now there's a LOT going on and we should be able to compose more of an all round informative newsletter of important events.

In case that some have not been getting our mailouts, (they go out between once every week or two weeks), check your SPAM folders, maybe even take us off the "black-list". Otherwise we may have an old EMail address. I have started a WEB based program to allow editing / adding and removing your data for subscription, but alas, time is always the problem.

Meantime anyone desiring to be on (recommended) or off (NOT) the list can PM me for now.

I am sure that we will have access to numbers derived from the survey and I am POSITIVE that the results will contribute to the creation of a well designed research program. We are the BIGGEST access point to POIS information and it behoves us to make it available to those who can really help us. If we do NOTHING else, this we must do!

This information will lead to widening spirals to collect ever more specific and pertinent POIS data.

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 03, 2012, 04:57:47 PM
We've received two donations today!! Way to GO! One for $100 and another for $50!

So, good start! Thanks to the donors!

Title: Re: This may seem like a familiar place.
Post by: demografx on October 04, 2012, 01:33:25 AM

As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.


Not true for me.

Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!


Your testosterone worked because it was administered and controlled by a doctor. You didn't just try it for the heck of it! Or if at least you did, it was still under the control of a doctor who could say, "today it didn't work because of such and such but lets change the dose a bit and keep it up for a bit..." or whatever. At least more control, and entered with a plan and evaluated with understanding.


Not only that, Dave, but it was a 10-year process for me since the 1st POIS paper came out. I contacted whoever I thought would have a clue, worldwide, in the US, and in Europe. Mostly well known sexologists, most notably Jane Thomas at Johns Hopkins University.

In the 7th year, I finally decided to "pull out all guns" and "shoot" this evil, hideous creature-thing called POIS. I contacted my Harvard biotech pioneer friend and he suggested a major teaching university and world class laboratory. I was reluctant, but desperate enough to follow his advice and the forum's advice - which was to get a full range of hormonal blood tests, which led to a brain MRI -- and many more formalized blood tests. My endocrinologist doctor is a fully tenured top University Professor in Endocrinology and is in a RESEARCH environment because of the university.

My daily (365X) testosterone patches are the result of THOROUGH testing, consultation, and re-testing, with a sympathetic, top ranked,senior endocrinologist-physician and a world class medical laboratory. It did not happen overnight by ANY stretch of the imagination.

No snap of the finger here.

Careful, methodical, validated, adjusted, constantly monitored, and it will continue that way.

And even with all that - in our primitive pre-NORD Grant period - I was lucky.

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 04, 2012, 09:55:30 AM
Hey everybody, we've received another donation for $50!!

THAT'S THE WAY, KEEP IT COMING.

THANK YOU!

BTW there were 2 for $50 today!

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 04, 2012, 11:48:36 AM
Just a repeat of the link to Dr. Slamanca's Survey:

https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
Title: Re: This may seem like a familiar place.
Post by: poisioq on October 04, 2012, 06:02:58 PM
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 05, 2012, 06:44:22 AM
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thanks for donating. ALL donors whould be worshipped ;D

Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on October 05, 2012, 10:19:15 AM
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thanks for donating. ALL donors whould be worshipped ;D


hahaha
Title: Re: This may seem like a familiar place.
Post by: demografx on October 05, 2012, 10:37:46 AM
if you get a donation in honour of myself it's because i've just made  a mistake, didn't mean self worshipping :)


Thank you, boissioq!!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 05, 2012, 08:44:28 PM

Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to  our most generous SPONSOR!

Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free  life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


                                             (http://poiscenter.com/newsletters/2for1.jpg)
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 06, 2012, 06:35:25 AM
Well the Indiegogo "Campaign" has 43 hours to go.

Many thanks to the two donors who have raised a total of $85.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 06, 2012, 12:37:29 PM
Look for our latest mailout! If you haven't received it check you should check your SPAM folder

Time to blast POIS! Let's Go!

(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: lauracostis on October 06, 2012, 03:05:31 PM
Daveman, can I use a prepaid credit card to make a payment at NORD.  I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 06, 2012, 03:49:57 PM
Daveman, can I use a prepaid credit card to make a payment at NORD.  I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.

I'll get back to you!

Title: Re: This may seem like a familiar place.
Post by: Vincent M on October 07, 2012, 12:33:47 PM
Just filled out the survey.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 07, 2012, 01:11:36 PM
Daveman, can I use a prepaid credit card to make a payment at NORD.  I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.

I am told that it shouldn't be a problem. They are handled just like any credit card!

I'm going t o look into getting one!!

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 07, 2012, 02:38:02 PM
Hey, another donation for $100 has come in, and on a Sunday too!

Way to go! Although I don't know who it is, this person has already donated $400 in quite a short bit of time!

As yo know, this $100 goes toward October's total for doubling!!

YAAYYYYY!

Title: Re: This may seem like a familiar place.
Post by: demografx on October 07, 2012, 02:56:16 PM
Wow!!! Hurray!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 07, 2012, 07:37:53 PM
Look for our latest mailout! If you haven't received it check you should check your SPAM folder

Time to blast POIS! Let's Go!

(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

THANKS, DAVEMAN!
Title: Re: This may seem like a familar place.
Post by: demografx on October 07, 2012, 08:53:42 PM
(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)

$9,270.00    $9,350.00    $10,272.00
$15,010.00 raised!
 
THANKS, $100 DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
Title: Re: This may seem like a familiar place.
Post by: demografx on October 07, 2012, 09:34:51 PM

Thank you very much David Landau ["Squiggy" from 'Laverne and Shirley' TV shows] for this generous offer! [edit by Demo: GET SQUIGGY'S FUNNY AUDIO BOOK FREE -- THE ONLY CATCH IS WE NEED TO KNOW WHERE TO MAIL YOU THE CD'S!!]

There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.

I'm going to start "coming clean" from today forward!



Daveman, I showed your post to Squiggy and he said, "Aawwww" in a very appreciative voice!


Title: Re: This may seem like a familiar place.
Post by: demografx on October 08, 2012, 01:40:05 AM
(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)

As a start, David is making available to you all for free: his 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.

Title: Re: This may seem like a familiar place.
Post by: demografx on October 08, 2012, 01:43:08 AM

Just filled out the survey.

Thanks, Vincent M.!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 10, 2012, 12:12:18 AM
Guys,

I've just donated $150 more.

Together we can make POIS Research a reality!

Thanks again to our SPONSOR for his generosity!

And thank you, Demo and Dave, for the superb work you've been doing all this years!!!

Sincerely,
Mat




(http://www.animated-gifs.eu/website-thanks/0179.gif)

M A T  !!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 10, 2012, 12:21:55 AM
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 10, 2012, 08:24:06 AM
There was one extraordinarily ignorant and stupid SPAMMer that posted about 40 posts on our forum last night!!

What a waste of his and my time!!

It would help him a lot to know that he gains nothing here. No-one is interested in purses and I don't leave the posts up long enough that they receive any SEO benefit!

Besides I report them the the SPAMMERs database,, so they loose a "good" in large quotes usernames and gateway URLs.

If you see any that I have  missed let me know, report to moderator!

I hope to put a more elegant filter as I find time.

Title: Re: This may seem like a familiar place.
Post by: demografx on October 10, 2012, 08:38:15 AM

Look for our latest mailout! If you haven't received it check you should check your SPAM folder

Time to blast POIS! Let's Go!

(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

THANKS, DAVEMAN!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 10, 2012, 06:50:47 PM

Any news about the functional MRI study??? It seems to be one of the best investigation to do !  :)


I agree, Habibou!

Rutgers was promising, but they remain more interested in female orgasm functional MRI studies  >:(      Politics!  ???
Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 11, 2012, 04:20:15 AM

Any news about the functional MRI study??? It seems to be one of the best investigation to do ![/size]  :)


I agree, Habibou!

Rutgers was promising, but they remain more interested in female orgasm functional MRI studies  >:(      Politics!  ???

Wear a skirt while getting the MRI? :)
Title: Re: This may seem like a familiar place.
Post by: demografx on October 11, 2012, 08:23:45 PM
kurtosis, LOL!

 ;D ;D ;D ;D ;D
Title: Re: This may seem like a familiar place.
Post by: demografx on October 12, 2012, 09:23:41 AM
$350 OCTOBER MONEY BOMB! TODAY IS 12 DAYS INTO OCTOBER!


Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to  our most generous SPONSOR!

Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free  life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


                                             (http://poiscenter.com/newsletters/2for1.jpg)


Title: Re: This may seem like a familiar place.
Post by: demografx on October 12, 2012, 10:29:04 AM

There was one extraordinarily ignorant and stupid SPAMMer that posted about 40 posts on our forum last night!!

What a waste of his and my time!!

It would help him a lot to know that he gains nothing here. No-one is interested in purses and I don't leave the posts up long enough that they receive any SEO benefit!

Besides I report them the the SPAMMERs database,, so they loose a "good" in large quotes usernames and gateway URLs.

If you see any [spammer] that I have  missed let me know, report to moderator! - button is located at the lower right corner of the post

I hope to put a more elegant filter as I find time.




Sorry you had to go through that, Daveman!


Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on October 12, 2012, 10:45:02 AM
there are some spammers that dont post at all but have their websites under their profile is there a way to report them.
they are affecting the member count.
Title: Re: This may seem like a familiar place.
Post by: Samir on October 12, 2012, 12:28:25 PM
I use stopforumspam.com to moderate each new registration on my own site.  I can set my site to email me when a new member registers, so valid ones get online quick.  And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 12, 2012, 02:17:15 PM
there are some spammers that dont post at all but have their websites under their profile is there a way to report them.
they are affecting the member count.

I go through the memberlist deleting that stuff about twice a month.

There are also a bunch that sign on and linger, but don't put any data.

I guess if you see that there are more than a couple you could remind me to do a sweep!

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 12, 2012, 02:39:43 PM
I use stopforumspam.com to moderate each new registration on my own site.  I can set my site to email me when a new member registers, so valid ones get online quick.  And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.

Yep, that's what I'm doing, but  about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet.  I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!

Title: Re: This may seem like a familiar place.
Post by: tom on October 12, 2012, 07:37:45 PM
Hello,
I've never written anything here or on the other forum before as I struggle to talk about it and am quite shy, but I wanted to introduce myself mainly to thank you all for everything you've all done.
To quickly describe myself I'm 23 and I developed pois at the age of 16 (I suffer from cognitive symptoms) but I didn't understand what was happening or make the connection between my symptoms and ejaculation. Very slowly I eventually started to make the connection and I finally discovered that other people have this illness when I found the other forum over two years ago.

Thanks to the work of everyone involved in the forum I was able to learn about pois and to try and manage its impact by preventing symptoms on days when I had a lot on (this definitely benefited both my university work and  social life). I also gained hugely by learning about the supplements that have been beneficial; I take fenugreek, gingseng, ginkgo, CoQ10, niacin and recently added vitamin b complex thanks due to the discovery by kurtosis).

Importantly I also learnt about the ways that pois has similarly impacted on other people's lives, which was unbelievably helpful in confirming the difficulty that it has created in mine  making me feel much more normal and not at fault. Im not brilliant at expressing myself but I will always be incredibly grateful for this.

 I have also in the last few days been able to make another big step in my life thanks to you all. Using the description of pois on the website created, articles that demo kindly emailed me a long time ago, and the fantastic  descriptions of what its like to have pois from the reddit and indiegogo campaign, I was able to tell my mum and her partner about this illness. As quite a private person who has always kept pois a secret this was a big step for me and something that I certainly could not have made without the resources and emotional support I get from reading this forum. They were both incredibly understanding so I just want to say thank you so much for giving me the resources and strength to do this.

I understand that much effort has been undertaken to raise funds for the research through NORD (which if I understood correctly the previous forum annoyingly did not support prompting the switch of many people to this forum, myself included :) ) and over $13000  has been raised which is fantastic. My family have helped me donate $80 this evening, although this is less than what some have donated I do hope it helps and we will definitely donate again soon. (We did get a confirmation email but please do contact me if for whatever reason this donation has not gone through)

This is definitely more of an essay than I meant it to be lol, so I will quickly end with saying thank you again to everyone for everything you've done, and although I'd certainly not intend to downplay the huge influence that other people have made, I would like to say a special thank you to demo and daveman who have worked tirelessly for years in getting this forum and the awareness of pois to where it is today.  On a personal note the kindness and understanding that you two have both shown when talking about pois has meant a lot to me.


Many thanks
Tom
Title: Re: This may seem like a familiar place.
Post by: demografx on October 12, 2012, 09:26:52 PM
Tom: WELCOME ABOARD!!

Please check our comprehensive list of POIS resources for you, right here:

http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

Best wishes!

Demo and Daveman
Title: Re: This may seem like a familiar place.
Post by: demografx on October 12, 2012, 09:37:07 PM

My family have helped me donate $80 this evening


Thank you, Tom!!!

$80 on your first post!

And it's Money Bomb Month (October), which means our Sponsor bumps your Donation to $160.00!

Title: Re: This may seem like a familiar place.
Post by: Samir on October 13, 2012, 12:10:26 AM
I use stopforumspam.com to moderate each new registration on my own site.  I can set my site to email me when a new member registers, so valid ones get online quick.  And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.

Yep, that's what I'm doing, but  about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet.  I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!


Awesome. :)  Thank you for working hard to keep increasing POIS awareness.  I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better.  8)
Title: Re: This may seem like a familiar place.
Post by: demografx on October 13, 2012, 01:35:18 AM
Welcome back, Samir!  :)
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 13, 2012, 04:44:45 AM
I use stopforumspam.com to moderate each new registration on my own site.  I can set my site to email me when a new member registers, so valid ones get online quick.  And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.

Yep, that's what I'm doing, but  about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet.  I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!


Awesome. :)  Thank you for working hard to keep increasing POIS awareness.  I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better.  8)

Have you seen all the stuff on Niacin and B-Complex. It's got my POIS beat! Almost 0 POIS.

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 13, 2012, 05:39:40 AM
Hello,
I've never written anything here or on the other forum before as I struggle to talk about it and am quite shy, but I wanted to introduce myself mainly to thank you all for everything you've all done.

..................

Importantly I also learnt about the ways that pois has similarly impacted on other people's lives, which was unbelievably helpful in confirming the difficulty that it has created in mine  making me feel much more normal and not at fault. Im not brilliant at expressing myself but I will always be incredibly grateful for this.


I'm glad you are taking the steps to "come out". I find that you express yourself very well. Very articulate and clearly expressed!


I understand that much effort has been undertaken to raise funds for the research through NORD (which if I understood correctly the previous forum annoyingly did not support prompting the switch of many people to this forum, myself included  )


Can you believe that recently we have heard from a member who was posting "thank you's" on the Naked Scientists Forum to those who have donated for the October Money Bomb campaign, and they were asked to REMOVE the message. The message was very controlled so as NOT to promote, but they felt that it was TOO much.

I'm afraid that SERIOUS SCIENCE over there is not REALLY a scenario. What is MORE scientific than REAL Research! I'm sorry if I sound annoyed, but I AM. Scientific Smoke Blowing!



My family have helped me donate $80 this evening, although this is less than what some have donated I do hope it helps and we will definitely donate again soon. (We did get a confirmation email but please do contact me if for whatever reason this donation has not gone through)


No problem. Your donation has been received an placed into the fund.


Many thanks
Tom

Many Thanks to you!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 13, 2012, 09:08:50 AM
$598.00 OCTOBER MONEY BOMB! TODAY IS 13 DAYS INTO OCTOBER!


Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to  our most generous SPONSOR!

Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free  life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


                                             (http://poiscenter.com/newsletters/2for1.jpg)

You will feel better for doing this.



Title: Re: This may seem like a familiar place.
Post by: Daveman on October 13, 2012, 12:43:59 PM
Here's to LIFE (and POIS), with another donation of $18.

GREAT, Keep 'em coming guys!

Title: Re: This may seem like a familiar place.
Post by: demografx on October 13, 2012, 01:48:19 PM
Thank you for the $18 "to Life"!

Title: Re: This may seem like a familiar place.
Post by: demografx on October 13, 2012, 03:30:58 PM
Hi Guys!

I have just converted my pledge into real donation, $800 were sent to NORD for POIS research.

Thank you all for making our group a real like-minded activists! I am really happy to be part of our team who have the greatest challenge to solve, that makes us special. We are the first who have this challenge now, but the efforts and results we achieving now will be very important to more and more people in the future.

Victor


THANK YOU, VICTOR!!!

THIS IS A HUGE LEAP FOR OCTOBER'S DONOR DRIVE!

All the best,
DEMO AND DAVEMAN


Title: Re: This may seem like a familiar place.
Post by: demografx on October 13, 2012, 03:48:26 PM
Guys,

I've just donated $150 more.

Together we can make POIS Research a reality!

Thanks again to our SPONSOR for his generosity!

And thank you, Demo and Dave, for the superb work you've been doing all this years!!!

Sincerely,
Mat



(http://www.animated-gifs.eu/website-thanks/0179.gif)

M A T  !!


Thanks for ALL your help!!
DEMO AND DAVEMAN
Title: Re: This may seem like a familiar place.
Post by: tom on October 14, 2012, 07:39:35 PM

[/quote]

Can you believe that recently we have heard from a member who was posting "thank you's" on the Naked Scientists Forum to those who have donated for the October Money Bomb campaign, and they were asked to REMOVE the message. The message was very controlled so as NOT to promote, but they felt that it was TOO much.

I'm afraid that SERIOUS SCIENCE over there is not REALLY a scenario. What is MORE scientific than REAL Research! I'm sorry if I sound annoyed, but I AM. Scientific Smoke Blowing!


That's really sad and quite surprising to hear, and its very understandable that your're annoyed. It does amaze me that a science forum would not be interested in being a platform to drive new research, particularly as it would be in their interest to be part of a new scientific discovery. Also as members of the science community, they should know as much as anyone the importance of having controlled experiments carried out by experts with the  knowledge to ensure that not only is the treatment safe and controlled, but that it is based on scientific theory. Its quite strange that they were happy with us attempting to find a cure ourselves, which although there has been much success with niacin, vit b complex and other supplements, it does involve much guess work and as such carries a certain degree of risk no matter how careful we are. However in contrast they were not ok with supporting a registered charity in providing experts to safely do the research instead.They were clearly more worried about their rules and red tape than our well being which seems like quite a betrayal by them after all the work yourself demo and many others have done on the forum.
 The forum you've created here is fantastic however, and is definitely a much better organised resource. This will make it easier for both researcher's and pois sufferers when learning about pois. It is definitely a better home here  :)
Tom
Title: Re: This may seem like a familiar place.
Post by: tom on October 14, 2012, 08:14:12 PM
sorry ive just realised than when I tried to reply to davemans post, its not shown as it normally would for a quote, must've done a bit wrong :P
Title: Re: This may seem like a familiar place.
Post by: Samir on October 16, 2012, 01:11:34 AM
I use stopforumspam.com to moderate each new registration on my own site.  I can set my site to email me when a new member registers, so valid ones get online quick.  And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.

Yep, that's what I'm doing, but  about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet.  I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!


Awesome. :)  Thank you for working hard to keep increasing POIS awareness.  I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better.  8)

Have you seen all the stuff on Niacin and B-Complex. It's got my POIS beat! Almost 0 POIS.


I have seen some of it.  I wish I would've remembered when I went shopping tonight. :(  I hovered in the vitamins aisle for a bit and couldn't remember why I was doing that. :(
Title: Re: This may seem like a familiar place.
Post by: lauracostis on October 16, 2012, 02:33:59 AM
Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer.  So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them.  I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam.  Higher levels of PSA are also common with BPH (enlarged prostate).  Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation.  I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.

"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests

Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 16, 2012, 11:57:40 AM
Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer.  So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them.  I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam.  Higher levels of PSA are also common with BPH (enlarged prostate).  Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation.  I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.

"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests

Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.

Well Sonny, let me put my teeth back in... LOL

No seriously. I was kind of worried about this and hadn't checked the prostate for maybe 5 yrs!!  Finally just recently I went to check it and it came out great, maybe even a little low if I remember rightly!.  I have prostate swelling when I have POIS, although less nowadays with the niacin. I think, I hadn't had an orgasm nor POIS when I went for the test.

But I'm just one, and I think your idea has interesting merit!

There's gotta be a decent number of us above or near 50. (trying to make myself feel better here  ;D ) It would be interesting to hear from the younger ones as well to see if they feel as though they have prostate swelling!

Title: Re: This may seem like a familiar place.
Post by: demografx on October 16, 2012, 02:26:08 PM
$598.00 $1,448.00 OCTOBER MONEY BOMB! TODAY IS 16 DAYS INTO OCTOBER!


Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to  our most generous SPONSOR!

Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free  life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


                                             (http://poiscenter.com/newsletters/2for1.jpg)

You will feel better for doing this.
                                                       DEMO AND DAVEMAN





Title: Re: This may seem like a familiar place.
Post by: demografx on October 16, 2012, 02:43:10 PM
Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer.  So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them.  I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam.  Higher levels of PSA are also common with BPH (enlarged prostate).  Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation.  I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.

"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests

Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.

Since I began my testosterone replacement therapy, I've been taking annual PSA's.

All normal thankfully. :)

Title: Re: This may seem like a familiar place.
Post by: demografx on October 16, 2012, 08:28:29 PM
See the Countdown Timer for POIS' OCTOBER MONEY BOMB!

http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB

Demo and Daveman




Title: Re: This may seem like a familiar place.
Post by: demografx on October 16, 2012, 08:48:52 PM
Guys,

I've just donated $150 more.

Together we can make POIS Research a reality!

Thanks again to our SPONSOR for his generosity!

And thank you, Demo and Dave, for the superb work you've been doing all this years!!!

Sincerely,
Mat



(http://www.animated-gifs.eu/website-thanks/0179.gif)

M A T  !!


Thanks for ALL your help!!

MAT IS THE CREATOR AND DEVELOPER OF 2 VERY IMPORTANT POIS RESOURCES!!

1. POIS' YouTube Channel

2. POIS information website

See http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

DEMO AND DAVEMAN
Title: Re: This may seem like a familiar place.
Post by: demografx on October 16, 2012, 09:12:58 PM
(http://i858.photobucket.com/albums/ab143/demografx/145F18E8-8E80-435E-817B-9CB4C1A11CDE-614-000000611E317931.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on October 17, 2012, 12:09:38 AM
(http://i858.photobucket.com/albums/ab143/demografx/CE2839EB-5E6E-4DE2-80B8-4F576F20E398-614-0000008C93770FC0.jpg)
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 17, 2012, 01:26:35 PM
Hey we're in the news, LOL!!

BTW another $50 donation came in!! Worth a hundred!!

This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!

Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!

Thanks Mr. Donor!




Title: Re: This may seem like a familar place.
Post by: demografx on October 17, 2012, 05:51:08 PM
(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)

$9,270.00    $9,350.00    $10,272.00
$15,010.00 raised!
 
THANKS, $50.00 DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p

Title: Re: This may seem like a familiar place.
Post by: demografx on October 17, 2012, 06:44:19 PM

See the Countdown Timer for POIS' OCTOBER MONEY BOMB!

http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB

Demo and Daveman
Title: Re: This may seem like a familiar place.
Post by: victor.kons on October 17, 2012, 11:02:20 PM
Hey we're in the news, LOL!!

BTW another $50 donation came in!! Worth a hundred!!

This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!

Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!

Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.

Thank you POISman, so much!!!

Victor

Title: Re: This may seem like a familiar place.
Post by: demografx on October 18, 2012, 12:51:06 AM
Hey we're in the news, LOL!!

BTW another $50 donation came in!! Worth a hundred!!

This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!

Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!

Thanks Mr. Donor!


This $50 donation was from Russian forum member - POISman.

Thank you POISman, so much!!!

Victor


(http://www.emofaces.com/en/buddy-icons/r/russia-flag-waving-buddy-icon-animated.gif)

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 18, 2012, 06:37:27 AM
Hey we're in the news, LOL!!

BTW another $50 donation came in!! Worth a hundred!!

This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!

Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!

Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.

Thank you POISman, so much!!!

Victor


And thank you so much Victor for your help from your side of the world.

I wish I could read and write Russian to have a better look at your forum.

My thanks to your members for their participation in the POIS effort! We are all in this together.
Title: Re: This may seem like a familiar place.
Post by: victor.kons on October 18, 2012, 08:33:29 AM
Hey we're in the news, LOL!!

BTW another $50 donation came in!! Worth a hundred!!

This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!

Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!

Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.

Thank you POISman, so much!!!

Victor


And thank you so much Victor for your help from your side of the world.

I wish I could read and write Russian to have a better look at your forum.

My thanks to your members for their participation in the POIS effort! We are all in this together.
We all are together, thanks for encouragement Dave!

Victor
Title: Re: This may seem like a familiar place.
Post by: demografx on October 19, 2012, 11:00:00 AM
My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research  :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !


(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)

$9,270.00    $9,350.00    $10,272.00
$15,510.00 raised!
 
THANKS, HABIBOU & FAMILY!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
Title: Re: This may seem like a familiar place.
Post by: demografx on October 19, 2012, 06:00:33 PM

See the Countdown Timer for POIS' OCTOBER MONEY BOMB!

http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB

Demo and Daveman

Title: Re: This may seem like a familiar place.
Post by: victor.kons on October 19, 2012, 10:22:13 PM
Hi Guys,

I think at this moment we will have more than $33 500 if all the pledges will be fulfilled. Remember we pledged to donate if the sum of donations and pledges will be $33 500, it is the case now. Thats why - its time for the action!

Victor
Title: Re: This may seem like a familar place.
Post by: demografx on October 20, 2012, 02:15:21 AM
(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)

$9,270.00    $9,350.00    $10,272.00
$16,610.00 raised!
 
THANKS, NEW $1,000 DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)


Title: Re: This may seem like a familiar place.
Post by: demografx on October 20, 2012, 02:18:55 AM
Hi Guys,

I think at this moment we will have more than $33 500 if all the pledges will be fulfilled. Remember we pledged to donate if the sum of donations and pledges will be $33 500, it is the case now. Thats why - its time for the action!

Victor

Victor, thank you for reminding us!
Title: Re: This may seem like a familiar place.
Post by: Observer on October 20, 2012, 07:53:50 AM
I just donated 50$ more, every grain of sand counts!
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 20, 2012, 08:30:02 AM
I just donated 50$ more, every grain of sand counts!

Observer you're the BEST!

Putting total up right now.


Title: Re: This may seem like a familiar place.
Post by: demografx on October 20, 2012, 01:18:28 PM

I just donated $50 more, every grain of sand counts!


(http://gifsoup.com/webroot/animatedgifs1/1111336_o.gif)


(http://assets0.ordienetworks.com/images/GifGuide/clapping/taxidriver.gif)

Daveman applauding ! (Robert de Niro is posing as Daveman)

Title: Re: This may seem like a familiar place.
Post by: demografx on October 20, 2012, 02:58:30 PM
See the Countdown Timer for POIS' OCTOBER MONEY BOMB!

http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB

Demo and Daveman


Title: Re: This may seem like a familiar place.
Post by: mat780 on October 23, 2012, 05:14:06 PM
People, this month (October) may be the biggest opportunity someone could give us to make a huge difference in our lives.
We could be closer than ever to start a serious and dedicated research to cure POIS.

Think on the following things for a minute:

What would you do to get rid of POIS?

What could you do if you were POIS free… forever?

Think on your family, your friends, your girlfriend, your job.

How much money and time have you wasted because POIS is present all the time?

This month someone is giving us the opportunity to research for a POIS free life by duplicating each dollar we donate.
Don’t wait any more, do yourself a favor and donate to NORD!

NORD Research Donations webpage:

https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

Kind Regards,
Mat
Title: Re: This may seem like a familiar place.
Post by: lauracostis on October 24, 2012, 11:49:25 PM
Just made a donation of 50$ on a prepaid credit card at 9:45 PST.  Daveman or Demo can one of you confirm that this transaction went through.  I have 200$ more of prepaid credit cards that I bought, but I just want to make sure this worked before I use all of them. 
Title: Re: This may seem like a familiar place.
Post by: lauracostis on October 25, 2012, 12:03:43 AM
just put the rest of the cards on there anyways, hope there is not a problem
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 25, 2012, 06:31:36 AM
Just made a donation of 50$ on a prepaid credit card at 9:45 PST.  Daveman or Demo can one of you confirm that this transaction went through.  I have 200$ more of prepaid credit cards that I bought, but I just want to make sure this worked before I use all of them. 

I'm sure it will be fine, but of course we will check anyways. Our special NORD atache has been out of the office, but should be back today.

I think it would have given a problem at the time of application if it were not to go through.

But we will check it for sure.

Thanks lauracostis in advance.

Title: Re: This may seem like a familiar place.
Post by: Daveman on October 25, 2012, 11:32:05 AM
just put the rest of the cards on there anyways, hope there is not a problem

Everything is fine, the charges went through without a problem!

Thank you very much. Your donation is now added to the sum for Oct.

Title: Re: This may seem like a familiar place.
Post by: lauracostis on October 25, 2012, 01:12:30 PM
just put the rest of the cards on there anyways, hope there is not a problem

Everything is fine, the charges went through without a problem!

Thank you very much. Your donation is now added to the sum for Oct.


thank you for checking on that for me
Title: Re: This may seem like a familiar place.
Post by: demografx on October 25, 2012, 01:45:57 PM


THANK
YOU
LAURACOSTIS!!!
Title: Re: This may seem like a familiar place.
Post by: Vandemolen on October 25, 2012, 05:53:40 PM
I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 25, 2012, 08:55:14 PM
Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.

I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.

I have been POIS-free for 3 years  in my opinion  because semen now regenerates quickly after ejaculation.

When my regeneration was very slow, my POIS was terrible.

I realize that regeneration-speed and POIS might be associative, not causative.

And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.
Title: Re: This may seem like a familiar place.
Post by: Stef on October 25, 2012, 09:32:54 PM
Hi All,

There's been a lot of research in the past few years on the general anti-inflammatory effects of testosterone (and also estrogen and progesterone).  The theory is that these hormones are neuro-protective and that they may decrease neuro-inflammation. They're being studied as treatments for neurodegenerative disorders and for neuropathy treatments.

Here's just one link of many, many article abstracts about this --  http://www.ncbi.nlm.nih.gov/pubmed/22966132.

So -- perhaps part of the reason that TRT helps some of you is its anti-neuroinflammatory activity.

Stef
Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 26, 2012, 03:18:11 AM
Hi All,

There's been a lot of research in the past few years on the general anti-inflammatory effects of testosterone (and also estrogen and progesterone).  The theory is that these hormones are neuro-protective and that they may decrease neuro-inflammation. They're being studied as treatments for neurodegenerative disorders and for neuropathy treatments.

Here's just one link of many, many article abstracts about this --  http://www.ncbi.nlm.nih.gov/pubmed/22966132.

So -- perhaps part of the reason that TRT helps some of you is its anti-neuroinflammatory activity.

Stef

There was a study on rats cells in vitro that suggested testosterone, beyond a threshold value, appeared to inhibit histamine release from mast cells. Estradiol and Oestrogen seem to augment it.
http://www.ncbi.nlm.nih.gov/pubmed/1384869
Also a more relevant paper on people with asthma with some useful references.
http://adc.bmj.com/content/88/7/587.full
Quote
"Oestrogen enhances, while testosterone inhibits eosinophil release. Testosterone is a powerful inhibitor of histamine."
This may be what Jon/JFerr described when he said that his POIS symptoms seriously improved when his testosterone nearly doubled but that it dipped again and his POIS symptoms resurfaced. The same for Daveman.

Women are known to get a "sex flush" following the histamine release of an O. This is much less common in men even though mast cells accumulate in the testes for histamine release to achieve O. I think the reason it's much less common in men is the inhibiting effect of testosterone.
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on October 26, 2012, 10:43:23 AM
two words in the  first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.
Title: Re: This may seem like a familiar place.
Post by: Vandemolen on October 26, 2012, 08:25:53 PM
This was not dr. Waldinger, but my allergist who said this.

Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.

I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.

I have been POIS-free for 3 years  in my opinion  because semen now regenerates quickly after ejaculation.

When my regeneration was very slow, my POIS was terrible.

I realize that regeneration-speed and POIS might be associative, not causative.

And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.
Title: Re: This may seem like a familiar place.
Post by: Daveman on October 27, 2012, 06:15:49 AM
I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.

Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 27, 2012, 07:43:07 AM
two words in the  first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.

Best place to go may be neuroscientists researching diseases like Parkinsons and Alzheimers. The reason being that these disorders are obviously "neuro"-logical but may have immunological and endocrinological components.
Why might they be interested in POIS?
Because some of our symptoms including cognition problems, shakes, chills etc. resemble the effects of some of these diseases but we only have them for a short time (or so we hope :)). So finding out the POIS reaction that produces this state may be interesting in understanding other diseases. Just a thought.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 08:59:00 AM
This was not dr. Waldinger, but my allergist who said this.

Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.

I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.

I have been POIS-free for 3 years  in my opinion  because semen now regenerates quickly after ejaculation.

When my regeneration was very slow, my POIS was terrible.

I realize that regeneration-speed and POIS might be associative, not causative.

And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.

If Dr Meinardi OR Dr Waldinger, it doesn't matter who: the medical "opinion"  that testosterone creates so much stress that it helps POIS is...nonsense.



Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 09:08:41 AM
I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.

Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.

You are factual, Daveman. Not negative. You summarize this better than me!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 09:25:55 AM
two words in the  first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.

Best place to go may be neuroscientists researching diseases like Parkinsons and Alzheimers. The reason being that these disorders are obviously "neuro"-logical but may have immunological and endocrinological components.
Why might they be interested in POIS?
Because some of our symptoms including cognition problems, shakes, chills etc. resemble the effects of some of these diseases but we only have them for a short time (or so we hope :)). So finding out the POIS reaction that produces this state may be interesting in understanding other diseases. Just a thought.

Excellent thought, kurtosis.
Title: Re: This may seem like a familiar place.
Post by: Stef on October 27, 2012, 11:48:53 AM
I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.

Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.

Hi All,

I'm also not trying to be negative.

NOTHING is known about POIS, so how can anyone here, myself definitely included, know how TRT (or niacin) helps some with POIS?

Van -- it sounds (to me) like your doc was referring to the dangerously high doses of testosterone (and other steroid hormones) taken illegally by athletes to enhance performance.  That's what allows them to push their sport to the max without noticing the pain and damage they're doing to themselves.

Demo reports wonderful success with TRT, despite his testosterone levels having been within normal limits when his endocrinologist agreed to try start giving it to him in small but increasing doses. I remember him saying that he had to really persist until his endocrinologist agreed, and that it was prescribed for him very cautiously.  As his dose was increased, his POIS began to diminish to the point of GONE WITH THE WIND.

Van -- re: what your doc said about TRT causing such a high-stress sensation that POIS won't be noticed -- I'm thinking that what he said vs what he meant, and/or how he interpreted what you asked -- might be different things.

Men who need TRT -- for whatever health reason -- do report eventually feeling alive and well for the first time in years.  They don't feel stressed -- they feel the opposite.  When needed, TRT lifts depression, increases muscular strength (increases it to normal muscular strength), may improve the lipid profile (cholesterol, etc.) and -- maybe not so great for POIS -- increases libido. With respect to POIS, possibly the most significant recent findings re: testosterone is that there is evidence from scientific studies that it may decrease neuro-inflammation, and may even be neuro-protective.

***This is not a suggestion for everyone with POIS to go on TRT!!!! It's got definite side-effects and risks and is not to be thought of as an easy/safe fix. Demo is being carefully monitored by his doc, and his dose has been adjusted over the three years or so that he's been taking it.

Something within Demo told him that TRT might help him -- and he persisted with good physicians.  Happily TRT works wonderfully for him.

VM -- I think there's a high likelihood that you doc was possibly thinking "anabolic steroids" -- like WWE wrestlers and athletes take illegally when they are "doping"  to increase their athletic performance, a la Lance Armstrong.

Again -- no criticism is meant here.

Eventually with research, POIS will be understood. 

As an aside, I am astonished at the donations this group has given for October!!   What amazing good fortune for all of you that a generous sponsor came forward, and that so many of you responded in kind. :-)

Stef

Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 12:34:42 PM
Thanks for clarifying, Stef!

My endocrinologist says "supraphysiologic doses" of testosterone are often taken by athletes. Dangerously. Stress? Sure! With 5x the normal dose!!!

Please let me clarify my story. My T levels were LOW initially. When they got to normal range with TRT - I felt better. But I was greedy after suffering POIS so miserably for 30++ years, so I asked for and was approved for a 50% higher dose (from 10mg daily Androderm to 15mg).

That worked! (For ME, I am not promoting TRT for anyone but myself. We are all different.)

After 2+ years of this, I reduced to 8mg daily. Unlike my other "cures", TRT kept improving my POIS steadily. I felt confident enough after 2+ years to experiment with a lower dose.

I credit my success to a desperate phone call I made to Dr Petr Weiss, a sexologist in the Czech Republic, recommended by Kate Thomas, from Johns Hopkins University in 2003.

Dr Weiss *firmly* insisted that TRT was my solution for POIS.

Kate Thomas was recommended by a Sexual Medicine doctor I saw on Larry King Live CNN, who was yet another one of MANY desperate phone calls from me shouting and screaming for help with my POIS! ;D



Title: Re: This may seem like a familiar place.
Post by: kurtosis on October 27, 2012, 01:03:43 PM
Demo, if TRT was damaging you in any way then surely your doctor would know. I presume that they're monitoring you for any adverse affects such as reduced testicular function and liver problems. These have been found in weightlifters who used huge amounts (as you point out) of exogenous testosterone.  If you're not suffering any adverse affects then I don't see what the problem is.

Testosterone has been shown to reduce histamine release and inflammation. Long term inflammatory illness appears to strain the body as it must divert pregnenolone into the production of cortisol rather than testosterone. So long term inflammation actually reduces Testosterone levels. This may actually increase the inflammation problem as the body can't produce enough testosterone.

Neurological inflammation is a very bad thing. Bad for long term mental health and cognitive ability in later life. If you feel you can't think straight because of POIS then stopping that is an imperative. TRT monitored by a doctor is a very responsible measure in that light and it's arguably safer than repeated use of synthetic corticosteroids to reduce inflammation.

I'm all for TRT and/or bio-identical hormone supplementation (pregnenolone or DHEA) IF it's supervised by a doctor.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 01:10:34 PM
Thank you, kurtosis!
Title: Re: This may seem like a familiar place.
Post by: demografx on October 27, 2012, 06:20:19 PM

...Men who need TRT -- for whatever health reason -- do report eventually feeling alive and well for the first time in years.  They don't feel stressed -- they feel the opposite.  When needed, TRT lifts depression, increases muscular strength (increases it to normal muscular strength), may improve the lipid profile (cholesterol, etc.)...


Stef, this was such a pleasantly unexpected surprise I saw with TRT!  Some of the above almost immediately.

Especially the depression lift! :)
Title: Re: This may seem like a familiar place.
Post by: Vincent M on October 31, 2012, 09:20:54 AM
Neem didn't have any effect at all on me. I took one capsule daily for almost 2 months. My lazy version of SLIT also yielded zero results for me after about 3 months so I've given up on that. I'll update my experiences with these two trials in my treatment profile when I get a chance.  I was thinking of trying a version of Kurtosis's method next, but his is focused mainly for cognitive issues and I want to focus on my joint pain, back pain, and eye burning for my next treatment trial.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 31, 2012, 09:48:55 AM
Vincent, thanks for reporting!
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on October 31, 2012, 10:32:48 AM
Neem didn't have any effect at all on me. I took one capsule daily for almost 2 months. My lazy version of SLIT also yielded zero results for me after about 3 months so I've given up on that. I'll update my experiences with these two trials in my treatment profile when I get a chance.  I was thinking of trying a version of Kurtosis's method next, but his is focused mainly for cognitive issues and I want to focus on my joint pain, back pain, and eye burning for my next treatment trial.
Look into wobenzym one guy said it help his pois by alot. And Wobenzym claims it reduces inflammation and can help people with arthiritis.
Wobenzym contains groups of digestive enzymes.  
not doctor continue at your own risk ;D
In summary of treatments you will find how to use it.
Title: Re: This may seem like a familiar place.
Post by: demografx on October 31, 2012, 02:49:19 PM

THANK
YOU
LIMEJUICE!!!

$1,000.00!!!
Title: Re: This may seem like a familiar place.
Post by: Vincent M on October 31, 2012, 05:39:36 PM
Thanks for the wobenzym suggestion, CertainlyPOIS. I'll look into it.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on November 02, 2012, 10:24:47 AM
I updated my treatment summary (here) http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513 to include home-remedy type methods I've found helpful to lessen fatigue, induce sleep at night, relieve other POIS symptoms, and solve another problem I had with pulling my hair out of my head (side effect from prozac). I'll paste the updated section here as well:

Carrots: Eating one carrot a day improves my cognitive function & eye burning a barely noticeable amount. Doesn't work as well as the other supplements.

Salt Water: Relieves a tiny bit of my eye pain and may improve cognitive function. A teaspoon of iodized salt mixed into a glass of water.

Vaseline, tiger balm, pain relieving creams, olive oil- Helps joint pain and eye burning (via moisturization)

Leave-in-Conditioner- Helps scalp irritation and hair pulling.

Mid-day Nap/ Meditation- Helps fatigue later in day.

Avoiding electronic entertainment or any activities that cause high pleasure spikes: Helps balance my emotions. For example if I watch a movie early in the day I will be less motivated to perform chores or less pleasurable productive activities because those activities will seem much less enjoyable compared to the movie.

Avoiding computer screen 2 hrs before bed: Helps induce sleep. Reading over boring material during these 2 hrs also helps induce sleep.

Bread & butter: Right before bed, helps induce sleep.

Milk: Right before bed, helps induce sleep.

Walking/Light exercise: If done early or mid-day helps induce sleep later that night.

Brief Cold exposure: Walking outside in winter in a t-shirt for 10-15min or taking a cold shower can induce alertness and reduce libido. It might also reduce inflammation cuz alternating hot/cold is known to have that effect.

Method used to stop pulling hair out of head: Stretching my toes apart & massaging my feet is equally pleasurable to pulling hair out of my head and keeps my hands busy.

I realize several of these are common sense and others are personal problems of mine, but the silent readers might also have those problems. Also I think we tend to get so focused on magic cure-all type things that we sometimes forget the smaller healthy natural steps we can take to relieve our symptoms. Hang in there guys.

Also I updated some of the treatments that weren't helpful for me:

Unhelpful Treatments:
Fluoxetine(Prozac): Just made me tired and lose hair. Increased all POIS symptoms slightly.
Venlafaxine(Effexor): Caused fatigue, bone pain, heart pain, and knee pain. The other side effects resolved, but my knees still hurt months later. Residual slight knee pain continues to this day (almost a year later) and is likely permanent.
Neem: Took one capsule for almost 2 months with no effect.
SLIT: Lazy version in which I just held pure semen under tongue for 5 min and swallowed. About 3 months almost every night. No effect.
NSAIDS/Tylenol: Zero effect.
Valerian: Didn't decrease my anxiety or help me sleep. No effect.
Kava: No effect
L-theanine: No effect.
Gaba: No effect, but only tried a few pills.
Zinc: Cheap store version. No effect.
Title: Re: This may seem like a familiar place.
Post by: Daveman on November 02, 2012, 11:37:52 AM
Hi Vincent M. Good to hear from you.

And thanks for the updates!

Seem like common sense things, but when combined every little bit helps. Sometimes the nose in front of the face
is not seen!! :)

thx
Title: Re: This may seem like a familiar place.
Post by: Prancer on November 02, 2012, 01:19:56 PM
Yes, thanks for the update Vincent M. Those are very good tips!
Title: Re: This may seem like a familiar place.
Post by: demografx on November 02, 2012, 04:05:47 PM
Thank you, Vincent M!
Title: Re: This may seem like a familiar place.
Post by: Stef on November 02, 2012, 09:20:26 PM
Thanks for clarifying, Stef!

My endocrinologist says "supraphysiologic doses" of testosterone are often taken by athletes. Dangerously. Stress? Sure! With 5x the normal dose!!!

Please let me clarify my story. My T levels were LOW initially. When they got to normal range with TRT - I felt better. But I was greedy after suffering POIS so miserably for 30++ years, so I asked for and was approved for a 50% higher dose (from 10mg daily Androderm to 15mg).

That worked! (For ME, I am not promoting TRT for anyone but myself. We are all different.)

After 2+ years of this, I reduced to 8mg daily. Unlike my other "cures", TRT kept improving my POIS steadily. I felt confident enough after 2+ years to experiment with a lower dose.

I credit my success to a desperate phone call I made to Dr Petr Weiss, a sexologist in the Czech Republic, recommended by Kate Thomas, from Johns Hopkins University in 2003.

Dr Weiss *firmly* insisted that TRT was my solution for POIS.

Kate Thomas was recommended by a Sexual Medicine doctor I saw on Larry King Live CNN, who was yet another one of MANY desperate phone calls from me shouting and screaming for help with my POIS! ;D





Thanks for clarifying, Demo.  I really did think that you started with a low normal testosteone level!

As an aside -- while I have momentary access to a computer this evening -- we were HAMMERED by Hurricane Sandy here in Connecticut.  Huge oaks and poplar trees -- many a few hundred years old -- are now down on the ground in various places.  There's no electricity at our home (no heat, hot water, water, lights, etc).

I've always hated camping -- but my husband and I are camping out at home!!!! Using flash lights, candles, and the fire place.
 
NO -- it's not romantic.

I hope none of you experienced Mother Nature's fury -- this was mean!

Stef
Title: Re: This may seem like a familiar place.
Post by: demografx on November 06, 2012, 06:08:25 PM
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on November 06, 2012, 06:11:48 PM
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL STRETCH!"


Title: Re: This may seem like a familiar place.
Post by: lauracostis on November 08, 2012, 12:42:23 AM
Recent studies on the anti-inflammatory properties of prostaglandin D2 (PGD2) show that high levels are associated with the end or finalization of the inflammatory process.  PGD2 is the cytokine that causes the flush from niacin.  Studies show that low levels of PGD2 are present at the initiation of the inflammatory process and high levels are present at the termination of the inflammatory process.  It is believed that increased levels of PGD2 metabolites block the production of "nuclear factor kappa B", which is a protien that initiates and maintains the entire inflammatory process.  It is possible that some of the POIS patients who get relief from niacin may be pre-blocking the inflammatory process via this process.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on November 08, 2012, 04:47:11 AM
Recent studies on the anti-inflammatory properties of prostaglandin D2 (PGD2) show that high levels are associated with the end or finalization of the inflammatory process.  PGD2 is the cytokine that causes the flush from niacin.  Studies show that low levels of PGD2 are present at the initiation of the inflammatory process and high levels are present at the termination of the inflammatory process.  It is believed that increased levels of PGD2 metabolites block the production of "nuclear factor kappa B", which is a protien that initiates and maintains the entire inflammatory process.  It is possible that some of the POIS patients who get relief from niacin may be pre-blocking the inflammatory process via this process.

There are also some papers which say that high levels of PGD2 may inhibit histamine release. That may be part of PGD2's role in the inflammation process. A rate limiter on histamine release. There's some discussion about this elsewhere on the site. A niacin flush may prepare the way for a safer O.
Title: Re: This may seem like a familiar place.
Post by: demografx on November 08, 2012, 11:22:57 AM
Levitra has worked for me at times. It is a PDE 5 inhibitor. Any ideas here why this has mysteriously (intermittently) helped my POIS?
Title: Re: This may seem like a familiar place.
Post by: demografx on November 08, 2012, 11:25:00 AM
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
Title: Re: This may seem like a familiar place.
Post by: kurtosis on November 08, 2012, 04:40:07 PM
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.

This is not advocacy, merely information.
http://www.sciencedaily.com/releases/2008/07/080720222549.htm
Title: Re: This may seem like a familiar place.
Post by: poisioq on November 08, 2012, 06:29:53 PM
i tried it before and after O but didn't help
Title: Re: This may seem like a familiar place.
Post by: lauracostis on November 08, 2012, 08:12:04 PM
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use.  It will be sold by the state to any individual 21 years and older.  However, we will probably be sued or attacked by the federal government for this.
Title: Re: This may seem like a familiar place.
Post by: demografx on November 08, 2012, 10:20:02 PM
Lauracostis, you'll be able to tell your grandchildren you were at the forefront of The New Civil War!
Title: Re: This may seem like a familiar place.
Post by: kurtosis on November 09, 2012, 06:16:00 AM
i tried it before and after O but didn't help

Some people are allergic to it and it triggers histamine release. For others it may decrease inflammation and/or histamine.  For the former group it may make POIS worse :)
Title: Re: This may seem like a familiar place.
Post by: demografx on November 09, 2012, 12:56:49 PM

THANK
YOU
TO OUR GREAT
FRIEND, DONNAH,
FOR DONATING YESTERDAY!!!



Title: Re: This may seem like a familiar place.
Post by: demografx on November 11, 2012, 03:13:24 PM
  :) :) :) :) :)   :) :) :) :) :)  :) :) :) :) :)  :) :) :) :) :)  :) :) :) :) :)  :) :) :) :) :)  :) :) :) :) :)  :) :) :) :) :)  :) :) :) :)

Way to go everybody in October. Our 2 for 1 promotion was SPECTACULAR!
 
Our dream has become a REAL reality. For so long the going has been so slow, like we were
never going to get there, but now we can actually see the light at the end of the tunnel.
 
We know you've all stretched and pushed to make your donation count. It’s been hard, but you
have to finally feel GREAT about it. And especially when the research gives us a real name, and definition,
and a direction, if not solution to this nightmare.
 
And a special thanks to our sponsor, who is just one of us. A regular guy who wants to do something about
POIS. Without him, we’d still be back there waiting for things to  happen.
 
Everybody, our semi-official total right now is...


(http://i48.photobucket.com/albums/f232/miss_minty/Salut/fanfare/drumroll.gif)



$24,735.00!! Can you believe it!!!???
 
We are just waiting for the last of the sponsor’s money to officially come in to make this total.
 
Thank you all again, and CONGRATULATIONS!!

Daveman and demografx


 
Title: Re: This may seem like a familiar place.
Post by: Daveman on November 15, 2012, 11:50:23 AM
I've gotten a few who ask if there's any problem with taking Cialis or Viagra with niacin. (I have this friend  ;D ) who needs niacin for POIS treatment AND something to help with erections...

Are they compatible? Anybody know?

Edit: A quick check on internet indicates that the combination with any of the "enhancers" is not recommended without doctor supervision. It's not just that it could be a good idea, nor even that it is prohibited, but certain elements could cause the Viagra to be twice a strong for instance, or lower BP to very low levels. Sometimes it is possible to do if "competing medications" are moderated... but it requires the knowledge of a doctor to say IF it's possible and by how much (which way)

Title: Re: This may seem like a familiar place.
Post by: demografx on November 15, 2012, 01:16:43 PM
Daveman, I would add Levitra to the same category as Cialis and Viagra.

Title: Re: This may seem like a familiar place.
Post by: mperez on November 17, 2012, 03:32:17 PM

I went with the Dr. yesterday and I asked him if I can take cialis and niacin at the same time and he said that is not remommended because the combination can have a problem with very low blood pressure, he said that I can take the cialis and wait 5 or 6 hours before I take niacin, I had very bad alergy and he gave me a shot that last more or less one month, I am going to check what effect it has on my pois during that time.
Title: Re: This may seem like a familiar place.
Post by: Daveman on November 17, 2012, 04:10:10 PM

I went with the Dr. yesterday and I asked him if I can take cialis and niacin at the same time and he said that is not remommended because the combination can have a problem with very low blood pressure, he said that I can take the cialis and wait 5 or 6 hours before I take niacin, I had very bad alergy and he gave me a shot that last more or less one month, I am going to check what effect it has on my pois during that time.

Thanks, good tip. So that means you can't try the Cialis / niacin combo for a month?

Let me know how it turns out!!

Title: Re: This may seem like a familiar place.
Post by: demografx on November 19, 2012, 12:48:02 AM
Wikipedia POIS entry for our Russian friends!

http://ru.m.wikipedia.org/wiki/POIS#_
Title: Re: This may seem like a familiar place.
Post by: mperez on November 19, 2012, 10:23:07 AM

According to the Dr. I can take cialis and after 4 or 5 hours I can take Niacin., last Firday he gave me a shot for alergy and some medication that I can take 3 or 4 times/day,  I had an O last Saturday and I my pois seems to be about only 30% of what I used to have, I didn't try the niacin becasue I had a big dinner too late, I am going to try the Cialis/Nicin and the alergy medications but I am going to monitor my BP, I am going to start using low dose of niacin then if no effect happens on low BP I am going to increase some.
Title: Re: This may seem like a familiar place.
Post by: demografx on November 19, 2012, 11:12:49 AM
Thank you for the $150.00 donation last night!
Title: Re: This may seem like a familiar place.
Post by: demografx on November 20, 2012, 10:40:07 AM
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL HOME $TRETCH!"


(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on November 20, 2012, 10:43:25 AM
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use.  It will be sold by the state to any individual 21 years and older.  However, we will probably be sued or attacked by the federal government for this.

Laurac, if and when the suing and attacks die down, I'd like to see POIS researchers investigate medical marijuana for its POIS anti-inflammatory possibilities!
Title: Re: This may seem like a familiar place.
Post by: demografx on November 20, 2012, 10:56:45 AM
Levitra -- a PDE5 inhibitor, just like Cialis and Viagra, is very similar in action.

In the early forum years (2007-2008+), I was temporarily convinced that Levitra was my "cure" for POIS.

It was a hit or miss cure (sometimes before sex, sometimes after sex), complicated by my taking periodic injections of testosterone cypionate.

Maybe you can find something useful in the old posts:
https://www.google.com/search?q=levitra+pois+site://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari

Edit: for some reason Cialis was a disaster for me. Maybe because of its 12 hour action? (Others are much shorter term actors).

Title: Re: This may seem like a familiar place.
Post by: demografx on November 21, 2012, 10:23:16 PM
1. In the early forum years , we were intrigued by the possible stimulation of NO (nitrous oxide) helping POIS.

Levitra, Viagra, and Cialis accomplish that.


In this document about pde5 inhibitors, perhaps there is an answer concerning the differences between levitra (vardenafil) and cialis (tadalafil). They say that vardenafil have more potency than the other. And I'm not sure, levitra have a better affinity for pde 2,3,4,7,8,10,11 than cialis . What can we do with this. It won't be me ! http://www.andrologyjournal.org/cgi/reprint/24/6_suppl/S52.pdf



2. Oxytocin (unrelated to above) was also a "big idea" we had in relation to ameliorating POIS.
https://www.google.com/search?q=oxytocin+pois+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari

Title: Re: This may seem like a familiar place.
Post by: lauracostis on November 25, 2012, 04:28:00 AM
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use.  It will be sold by the state to any individual 21 years and older.  However, we will probably be sued or attacked by the federal government for this.

Laurac, if and when the suing and attacks die down, I'd like to see POIS researchers investigate medical marijuana for its POIS anti-inflammatory possibilities!
Maybe I can run that study here in Washington some day
Title: Re: This may seem like a familiar place.
Post by: demografx on November 25, 2012, 01:21:42 PM
Laurac, yes!!! ;D
Title: Re: This may seem like a familiar place.
Post by: Daveman on December 01, 2012, 06:44:40 AM
For your information,

We have 446 members.
About 100 different members have posted in the last month.

For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.

Title: Re: This may seem like a familiar place.
Post by: demografx on December 01, 2012, 05:24:18 PM
And...we all owe a huge debt of gratitude to Daveman for building this forum from the ground up!
Title: Re: This may seem like a familiar place.
Post by: Deranged Nasat on December 07, 2012, 06:09:46 PM
I don't know if this is the right place to post this, and I apologise for any screw-ups. I'm 22 years old, and I've experienced what I now know to be POIS for six years. I've been desperate, miserable and on-and-off suicidal and nowhere could I find any explanation for what was happening to me. Tonight I managed to stumble across the description for POIS, and I've searched through everything I can reach on it. I'm feeling extremely emotional right now, because I think I've finally gotten answers. So here I am; I hope I'll be posting more in the days and weeks to come.  :)
Title: Re: This may seem like a familiar place.
Post by: demografx on December 08, 2012, 09:42:30 AM
Welcome, Deranged Nasat. Please visit
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

for a comprehensive list of POIS resources.
Title: Re: This may seem like a familiar place.
Post by: demografx on December 08, 2012, 09:51:04 AM
Our POIS Medical Research Funding Progress!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


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 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!


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Title: Re: This may seem like a familiar place.
Post by: Vincent M on December 08, 2012, 11:29:21 AM
...The effects come on immediately after ejaculation (if I manage not to carry all the way through to orgasm but still become aroused I experience reduced symptoms). I have both physical and mental ailments - the physical being a general sense of burning pain or tingling throbbing over much of my body, the feeling that I'm hot and buzzing with electricity, as if a warm fog has entered my body and is now under my skin. I have stabbing pains in my knees and back, really stiff muscles and a sore throat that makes it difficult to speak clearly. My eyes burn and I become really, heavily fatigued. Mentally, the fog leaves me totally unable to think with any degree of clarity...

Hey, Deranged Nasat. My physical symptoms are similar to yours in that I also get knee and back pain and eye burning. I haven't really found anything to target the knee and back pain to a great extent yet, but I've been taking crushed fenugreek seed capsules for over a year now and they help a lot with the eye burning and fatigue if I drink tea with them. This combo helps somewhat for my knees and back and all my other symptoms as well. You can look at my treatment summary for more detailed info on all the things that have helped my POIS symptoms.
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on December 11, 2012, 11:50:11 AM
doctor presribed intutiv(guafacine),It supposedly works on concentration and other cognitive problems. It is suppose to work pretty quickly so i will let you guys know how it works.
any body tried intutiv
Title: Re: This may seem like a familiar place.
Post by: demografx on December 12, 2012, 08:28:23 PM
Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: Stef on December 13, 2012, 12:22:19 PM
Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Demo,

What an inspiring and wonderful video!  "Squiggy" -- aka David Landers -- is such a great role model for anyone struggling with a disabling condition.  His going from keeping it a big, dark secret (which must have been exhausting!) to becoming a major spokesperson for the MS Society is truly praiseworthy, to say the least!

I hope the message he sent you, that "he knows about your forum and about the POIS struggle" and "offers all of his wishes that we push hard, as he has done in his life, to beat
this thing..." resonates with the forum members. 

The world needs to know about this brutal condition -- it's still unknown in many scientific circles, and there are undoubtedly many men suffering in silence and isolation due to ignorance of this syndrome and support forum. Getting that one, solid research grant off and running is the only way to make this condition real in the world of scientists.

I've said this before -- the researchers are out there -- it's the funding that's lacking. That first fund must start with you men -- it's the nature of rare disease research.

$9,000 -- that's all you need to go forward -- by the end of March, 2013.   

You guys can do it -- remember -- Ebay sales, perhaps another crowd-sourcing project, some outreach letters to companies that might kick in just a few thousand -- YOU CAN DO THIS!

Stef
Title: Re: This may seem like a familiar place.
Post by: mellivora on December 13, 2012, 03:54:30 PM
Thanks Stef! Its time to get inspired again friends. We have 3 months. But this year we're in a hugely better position than last year.
It's going to happen.
Title: Re: This may seem like a familiar place.
Post by: demografx on December 13, 2012, 07:26:13 PM
THANKS, STEF!

           
THANKS, MELLIVORA!

:o                 ::)
Title: Re: This may seem like a familiar place.
Post by: Vincent M on December 14, 2012, 12:04:36 PM
Brainfog, thanks for making your first post on the forum and describing your POIS history.

I'd like to remind all of our members to make a post describing your exact symptoms and treatments you've tried here http://poiscenter.com/forums/index.php?topic=81.0 in the Personal POIS Summaries and Histories thread. This way when you post about new treatments you try everyone will know whether your type of POIS is similar to theirs or not. Also it will be a great source of organized and concentrated treatment data. Keep it clear and easily readable if possible.
Title: Re: This may seem like a familiar place.
Post by: mellivora on December 17, 2012, 07:28:48 AM
Yep, I'm still about! Been away a bit as always but back again as always. Big up you people that are here 24/7 :) Thanks.
I'm feeling I might have another campaign in me after the festive period...
Title: Re: This may seem like a familiar place.
Post by: Vincent M on December 17, 2012, 10:54:51 AM
I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.
Title: Re: This may seem like a familiar place.
Post by: mellivora on December 17, 2012, 12:32:58 PM
I know I've been away a while but....didn't realise I was considered spam here now ;)
Title: Re: This may seem like a familiar place.
Post by: Daveman on December 18, 2012, 06:28:43 AM
I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.

Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!! Some still get through though. The filter is blocking over 250 per day now, which is a reflection of WEB visibility! So our visibiilty is getting better all the time.

I have erased about 4 SPAM posts a day.

There's a trick that can be applied which eliminates almost all SPAMMERS, but it means coding... and I just haven't had the time!

I'll see what we can do.

Title: Re: This may seem like a familiar place.
Post by: Daveman on December 18, 2012, 06:30:32 AM
I know I've been away a while but....didn't realise I was considered spam here now ;)

By no means at all, LOL.

And BTW, if you are up for a campaign, fantastic, we'll get a good team of 4 or 5 tegether and find a way to go this last little hall to our goal!!!

Title: Re: This may seem like a familiar place.
Post by: demografx on December 18, 2012, 07:06:20 AM
Mel, have you seen our campaigning? (Email+posts)
Title: Re: This may seem like a familiar place.
Post by: mellivora on December 18, 2012, 12:32:57 PM
I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!
Title: Re: This may seem like a familiar place.
Post by: Vincent M on December 18, 2012, 01:04:51 PM
Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!!

Wow I didn't realize there were that many spam members trying to infiltrate. Unreal.
Title: Re: This may seem like a familiar place.
Post by: demografx on December 18, 2012, 02:07:16 PM
I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!


We have until the third week of March, 2013  ****12 more weeks**** to beg, borrow, steal, campaign, sell on Ebay, write to a few companies, approach any donor you can think of -- to reach just under $9,000 more.  This will get us to our goal of funding the first solid, scientific POIS research grant!!

LET'S START IN 2013 -- NOT 2014 -- DO IT NOW!!!

Yep -- it's the truth!

Share your ideas here!

OR just do it!  


Our POIS Medical Research Funding Progress!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!

As Nancy Reagan would say: "Just Say No!" [to 2014!]
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on December 30, 2012, 11:45:09 PM
(http://calconews.com/wp-content/uploads/2012/12/new+year+animated+gif.gif)
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 01, 2013, 09:05:13 AM
January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.

We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.


Title: Re: This may seem like a familiar place.
Post by: Vincent M on January 01, 2013, 11:31:01 AM
Daveman, so just to be clear. It's still okay to talk about treatments that have relieved symptoms for us, correct?

Would it be okay for someone to describe why they think a treatment might have worked to relieve their symptoms?

I wish I could help with our research fund, but as I am now I can barely maintain my sleep cycle and I can't even work a cash register at a job.
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 01, 2013, 11:40:52 AM
Sure, as you so often have done.

And sure, often it is useful to try to understand what might be working or why. Every little thing may be an eventual link or hint.

But I want to avoid false hopes and or making evaluations that could well have no ground. We can raise doubts and question,
there ARE researchers watching. It may provide clues as to what is going on.

But we just can't be using people as guinea pigs for all that the members may be willing.

We don't know the dangers we could be subjecting people to. And we, at least here want to maintain the focus on
real research. It would be a miracle if we could make it by March.... but alas...



Title: Re: This may seem like a familiar place.
Post by: Vincent M on January 01, 2013, 01:02:48 PM
I see. Sounds reasonable to me.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 03:30:08 PM
January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.

We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.




I wish to acknowledge my total agreement with the above.

THANK YOU, DAVEMAN!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 03:31:51 PM

[Daveman's Forum Statement quoted directly below] sounds reasonable to me.


Thank you, Vincent M, for your support. You are a valued member.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 03:34:38 PM



January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.


We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.





This merits re-posting in red.

It is a major POIS Forum Statement.

Please read it carefully.

Best wishes to everyone for a POIS-free future!!




Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 04:05:16 PM
Our POIS Medical Research Funding status:

We only need about $9,000 more.

This is eminently achievable!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!


(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: amijgoro on January 01, 2013, 05:14:48 PM
Well said
Title: Re: This may seem like a familiar place.
Post by: Observer on January 01, 2013, 05:17:46 PM
We need the 9,000$ before this March, we cannot afford waiting another year! Everyone should do their best to donate - It does not matter how much, every contribution will make the difference - because this will mean that we are investing in our future, and the future of many people around the world who are suffering from POIS. And nothing is more valuable than our future and our health.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 05:45:18 PM
Yes, I agree with Observer.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on January 01, 2013, 05:47:27 PM

I see. [The Forum Statement below] sounds reasonable to me.


Thank you, Vincent M, for your support. You are a valued member.

It's been an honor being part of this forum with you Demo, and with everyone else. Once this research study is done we will have much more recognition in the medical world which will be awesome for our cause.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 05:48:20 PM

Well said


Thank you very much, amijgoro.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 05:49:40 PM

I see. [The Forum Statement below] sounds reasonable to me.


Thank you, Vincent M, for your support. You are a valued member.

It's been an honor being part of this forum with you Demo, and with everyone else. Once this research study is done we will have much more recognition in the medical world which will be awesome for our cause.

 :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 05:54:54 PM

We need the $9,000 before this March, we cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 05:59:24 PM
Well said, Observer!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 01, 2013, 10:46:28 PM
(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: Egordon on January 02, 2013, 01:32:55 AM
January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.

We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.


Thank. God.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 02, 2013, 09:02:36 AM
 :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 02, 2013, 09:34:39 AM
I once tried to get funding from the pharmaceutical firm who makes my TRT. Uphill climb (to do TRT - POIS clinical trials research)

But maybe now they could put up $9,000?

That's Corporate Peanut$!

Any thoughts?
Title: Re: This may seem like a familiar place.
Post by: demografx on January 02, 2013, 06:19:01 PM

Please visit our NORD Funding
Countdown Timer
http://www.timeanddate.com/countdown/generic?iso=20130322T00&p0=897&fg2=ff605a&msg=NORD+Grant+Funds+Due+For+2013&csz=1
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on January 03, 2013, 09:25:42 AM
I'll give an other 200$ this month...We are really close...i'm sure we are gonna make it

I'll spread the word in french forums
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 03, 2013, 01:05:45 PM
Thanks LAPOISSE

Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 05:22:31 PM
Thanks, LAPOISSE!  :)
Title: Re: This may seem like a familiar place.
Post by: mellivora on January 03, 2013, 05:33:01 PM
As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.

Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).
Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 07:33:15 PM

Please visit our NORD Funding
Countdown Timer
http://www.timeanddate.com/countdown/generic?iso=20130322T00&p0=897&fg2=ff605a&msg=NORD+Grant+Funds+Due+For+2013&csz=1
Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 07:36:01 PM
Thanks, mellivora !
Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 08:00:56 PM
Thanks, VAN, for donating another $200.

You have contributed $450 in total!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 08:05:15 PM
(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)





Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 03, 2013, 09:00:26 PM


We need the $9,000 before this March, we cannot afford to wait another year!

Title: Re: This may seem like a familar place.
Post by: demografx on January 04, 2013, 01:16:33 PM



(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 04, 2013, 01:18:53 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)






Title: Re: This may seem like a familiar place.
Post by: demografx on January 04, 2013, 02:41:14 PM

If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 04, 2013, 02:43:39 PM

Our POIS Medical Research Funding status:

We only need about $9,000 more.

This is eminently achievable!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!



(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 04, 2013, 02:46:11 PM

(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 04, 2013, 02:50:29 PM
Thanks, VAN, for donating another $200.

You have contributed $450 in total!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 04, 2013, 03:54:42 PM
As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.

Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).

Title: Re: This may seem like a familiar place.
Post by: Observer on January 04, 2013, 07:44:44 PM
I'll give an other 200$ this month...We are really close...i'm sure we are gonna make it

I'll spread the word in french forums

How are you exactly planning to do it, Lapoisse? Maybe some people here could copy your procedure in their own country forums, Thanks!
Title: Re: This may seem like a familiar place.
Post by: mat780 on January 05, 2013, 03:45:09 PM
POIS Heroes Needed

People, we only need $9000 to start POIS Research.

If you could donate $100 during January, February and March you could be one of the heroes!

It only takes 30 of us to do this real.

If you want to become a POIS Hero-Forum Member post your name here, and we can start shaping a different future for all of us.


Do it for your family, do it for your girlfriend, do it for your friends, do it to change your life, do it for you, do it for the future!


A little effort today will become a greater reward in the years to come.

Thanks!
Mat

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 05, 2013, 04:07:40 PM
Many Thanks for  your words Mat.

The hardest part about being a hero is making the first move. Once that's done, the rest is satisfaction and glory, and you find it wasn't really that hard at all.


Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 05, 2013, 09:12:19 PM
POIS Heroes Needed

People, we only need $9000 to start POIS Research.

If you could donate $100 during January, February and March you could be one of the heroes!

It only takes 30 of us to do this real.

If you want to become a POIS Hero-Forum Member post your name here, and we can start shaping a different future for all of us.


Do it for your family, do it for your girlfriend, do it for your friends, do it to change your life, do it for you, do it for the future!


A little effort today will become a greater reward in the years to come.

Thanks!
Mat



THANKS, MAT!

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 05, 2013, 09:52:08 PM
OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!



Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 05, 2013, 09:57:00 PM

Our POIS Medical Research Funding status:

We only need about $9,000 more.

This is eminently achievable!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!



(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 05, 2013, 09:58:09 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)





Title: Re: This may seem like a familiar place.
Post by: demografx on January 05, 2013, 10:03:58 PM
Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch
Title: Re: This may seem like a familar place.
Post by: demografx on January 05, 2013, 10:28:38 PM

Hi everybody,

Don't let all the advertising dissuade you from posting your free-flowing thoughts.

The discussions on this thread can go anywhere and everywhere.

As *you* wish.

Best,
Demo
Title: Re: This may seem like a familar place.
Post by: demografx on January 05, 2013, 10:39:14 PM
(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)

$9,270.00    $9,350.00    $10,272.00
Over $25,000.00 raised!
 
THANKS, Van, Repeat DONOR!!
towards our $33,500 goal.

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)


Title: Re: This may seem like a familar place.
Post by: demografx on January 05, 2013, 10:49:38 PM


Let's Cure POIS. Now.

(http://markarmstrongillustration.files.wordpress.com/2011/10/feature_presentation.gif)

Make "POIS Cured!"
the Feature Presentation - not...


(http://vegasfamilyevents.com/wp-content/uploads/2012/04/The-Avengers-movie-review-2012.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)



Title: Re: This may seem like a familiar place.
Post by: demografx on January 05, 2013, 10:56:27 PM


Let's Cure POIS. Now.



(http://whomurderedrobertwone.com/wp-content/uploads/2010/07/Feature-Presentation.png)

Let's make "THE DARK NIGHT (POIS) RISES (Cured)!"
the Feature Presentation - not..........


.......(http://upload.wikimedia.org/wikipedia/en/thumb/8/83/Dark_knight_rises_poster.jpg/220px-Dark_knight_rises_poster.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)





Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 12:48:27 AM



We need the $9,000 before this March, we cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 12:53:58 AM
It is reasonable to assume that - statistically - one individual amongst us -- is able to write That Check -- for $9,000 $6,700! By March 22!

We would all be extremely indebted. As we are to Our Previous Sponsor -- and all of you who gave and will continue to give -- BIG OR SMALL!! EVERY SINGLE DOLLAR COUNTS!!!!

T H A N K    Y O U   A L L!!! :):):):)
Title: Re: This may seem like a familar place.
Post by: demografx on January 06, 2013, 01:04:47 AM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: mat780 on January 06, 2013, 09:43:48 AM
I've just donated $100 to NORD. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!

Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!

$5, $10, $20, $50, every dollar counts!!!

As Demo said in a previous post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 06, 2013, 10:06:39 AM
WAY TO GO MAT!

It doesn't feel like it is going to be easy. But once it's done, it's surprising how easy it was.... and WHAT a feeling!

You become one of the ones who ACTUALLY DID SOMETHING!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 12:54:48 PM

I've just donated $100.

Mat


Thank you, Mat, for your REPEAT DONATION!!!






(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 06, 2013, 02:32:01 PM
I have updated the latest total. We are sneaking up there...  $25,535 up $800 from the latest October push.

There has been at least $800 donated since the October promotion, which is fantastic, however to make the March deadline
we need one last strong push from as many as we can get.

Think how we will feel once we get the last bit together. Our dream will begin to materialize.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 08:38:36 PM
Thanks for the update, Daveman :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 08:42:21 PM


We need the $9,000 $6,700 before this March 22. We cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 08:56:55 PM

I've just donated $100 to NORD. I hope more POIS Heroes join me.

This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort we can change our lives.

How much would you pay to be POIS free forever???

I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life I want.

Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!

Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!

You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!

$5, $10, $20, $50, every dollar counts!!!

As Demo said in a previous post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?

Join the POIS Heroes movement by donating today!

Thanks,
Mat

Title: Re: This may seem like a familiar place.
Post by: demografx on January 06, 2013, 10:04:54 PM

OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POIS Team!



Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 06, 2013, 10:19:50 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 07, 2013, 04:00:31 AM

Our POIS Medical Research Funding status:

We only need $6,700 more.

This is eminently achievable!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!




(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 07, 2013, 07:16:50 PM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch
Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 11:31:53 AM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 11:53:01 AM
I have updated the latest total. We are sneaking up there...  $25,535 up $800 from the latest October push.

There has been at least $800 donated since the October promotion, which is fantastic, however to make the March deadline
we need one last strong push from as many as we can get.

Think how we will feel once we get the last bit together. Our dream will begin to materialize.

Great news, Daveman!

This  _IS_  the winning team! :)
Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 12:38:21 PM


(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 12:48:05 PM
OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!



Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 12:56:35 PM
(http://www.prlog.org/10510105-stis-dave-skinnerl-presents-matt-pickhardt-of-uspsa-with-check-for-9000.jpg)

"HEY! WAIT! MAKE THAT CHECK OUT TO 'NORD-POIS FUND' INSTEAD!!"
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 01:04:52 PM


We need the $9,000 before this March, we cannot afford to wait another year!


Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 01:06:07 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
  Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 01:27:27 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)

Title: Re: This may seem like a familiar place.
Post by: amijgoro on January 08, 2013, 01:46:13 PM
Who's gonna match me if i donate 100? or perhaps raise?
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 02:32:25 PM
Wow, Amij!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 02:34:44 PM
Thanks, PBO, for $250 donation today!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 02:46:20 PM
Several of us - including me - have donated $X,XXX.

All we need are a few more!

Many thanks to all of you again for rising to the last call!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 02:59:45 PM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch


This means - on average - that we must raise about $100 per day to meet the March 22 deadline for inclusion of POIS research commencing with NORD in 2013.

And amazingly, we have just raised $200 and $250! Thanks again, fellow POISers!
Title: Re: This may seem like a familiar place.
Post by: PBO on January 08, 2013, 03:24:02 PM
Hi everyone!

It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!

PBO.

Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 03:26:10 PM
THANK YOU PBO!!!!!!!!! :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 03:34:42 PM
Hi everyone!

It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!

PBO.



Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 03:40:50 PM
(http://www.chachingonashoestring.com/wp-content/uploads/2012/05/five-dollar-bill21.jpg)

Q. DOES $5 REALLY MATTER?

A. YES!!!!


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

$5 fits real nice! C'mon! Feel the power! :) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 03:43:17 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 08, 2013, 04:23:00 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)

Title: Re: This may seem like a familiar place.
Post by: mat780 on January 08, 2013, 05:07:43 PM
Hi everyone!

It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!

PBO.

Thank you very much PBO!

Together we can do it!


Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 05:27:03 PM


If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?

Select as few or as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever!  :)

(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 05:42:31 PM
Hi everyone!

It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!

PBO.

Thank you very much PBO!

Together we can do it!





Thank you, Mat!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 05:48:32 PM

As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.

Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).

Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 08:49:36 PM

Our POIS Medical Research Funding Progress!

(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!


(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 09:02:25 PM
(http://www.marshu.com/articles/images-website/articles/presidents-on-us-paper-money/ten-10-dollar-bill.jpg)


Q. DOES $10 REALLY MATTER?

A. YES!!!!


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

$10 fits real nice! C'mon! Feel the power! :) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 11:11:37 PM


Individual efforts are (variably) valuable for alleviating [POIS] symptoms but I have no doubt a more methodical research is invariably better if the goal is to identify/confirm the causes and develop "truer" cures.

I'm sure all of us have financial obligations, most of which seem more important than this research fund. It's not my place to ask you to re-evaluate those obligations, but I highly recommend that you perhaps commit to a recurring, automatic donation of small payments, an option NORD offers. Otherwise, I suggest you set up a recurring reminder in your calendars or smartphones (weekly, monthly, bi-monthly, etc.) to manually make a small donation.


Title: Re: This may seem like a familiar place.
Post by: demografx on January 08, 2013, 11:20:19 PM
Who's gonna match me if i donate 100? or perhaps raise?

What did you decide? :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 12:01:36 AM

We need the $6,700 before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 09, 2013, 04:39:17 AM
Who's gonna match me if i donate 100? or perhaps raise?

What did you decide? :)

I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.

Amijgoro, yours is the first in this promo.

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 09, 2013, 05:12:07 AM
There are those over there at NSF, that think this is all a fun game!  I suppose we need some short of humor or diversion to help us make it through day by day, but it's another thing when the pursuit of real solution becomes a game.

Are we anal, perhaps a little. Are we fun? Sorry! We could play and dance all night, promise false or un corroborated hopes so that you think we are cool! Sorry!

Others MIGHT find a temporary solution for some of you. I hope so, and all the best to those who try.

Our vision is to find a positive and proven solution that the world of POISers outside these forums can use, simply by going to their
Doctors.

So far nothing works for everybody, and most new treatments are unstable...work for awhile on some, then loss effectivity.Face it WE DON'T KNOW WHAT THIS IS.

We want to know what this is! We'll find the treatment from there. It's not fun my friends. It's serious.

I don't know about you, but I'm tired of going around in circles..for almost 7 yrs now...
Title: Re: This may seem like a familiar place.
Post by: amijgoro on January 09, 2013, 12:42:38 PM
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.

(this isn't my last donation. i hope everyone will do the same)
Title: Re: This may seem like a familiar place.
Post by: PBO on January 09, 2013, 01:36:21 PM
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.

(this isn't my last donation. i hope everyone will do the same)

Amijgoro,

I cannot do other than agree with you! Thank you very much!
Come on guys, we need everyone?s collaboration!!

PBO
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 02:41:36 PM
Who's gonna match me if i donate 100? or perhaps raise?

What did you decide? :)

I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.

Amijgoro, yours is the first in this promo.



WOW, DAVEMAN!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 02:54:31 PM
There are those over there at NSF, that think this is all a fun game!  I suppose we need some sort of humor or diversion to help us make it through day by day, but it's another thing when the pursuit of a real solution becomes a game.

Are we anal, perhaps a little. Are we fun? Sorry! We could play and dance all night, promise false or un corroborated hopes so that you think we are cool! Sorry!

Others MIGHT find a temporary solution for some of you. I hope so, and all the best to those who try.

Our vision is to find a positive and proven solution that the world of POISers outside these forums can use, simply by going to their
Doctors.

So far nothing works for everybody, and most new treatments are unstable...work for awhile on some, then loss effectivity.Face it WE DON'T KNOW WHAT THIS IS.

We want to know what this is! We'll find the treatment from there. It's not fun my friends. It's serious.

I don't know about you, but I'm tired of going around in circles..for almost 7 yrs now...

SOMEONE IS BRAVE ENOUGH TO TELL IT LIKE IT IS! Thank you, Daveman!
Title: Re: This may seem like a familar place.
Post by: demografx on January 09, 2013, 03:15:42 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 09, 2013, 03:16:22 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 03:18:53 PM
Thanks, Amijgoro, for the $100 donation today!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 03:21:47 PM
We need $100 a day - on average - to make the March 22 deadline!

And we're on track!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 03:50:31 PM

OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!



Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 09, 2013, 03:53:27 PM
Thanks amijgoro, added to the "Daveman Promo" calculations as well.

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 09, 2013, 03:56:06 PM
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.

(this isn't my last donation. i hope everyone will do the same)

Amijgoro,

I cannot do other than agree with you! Thank you very much!
Come on guys, we need everyone?s collaboration!!

PBO

It's difficult to know how good it feels until you've actually done it!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 04:03:34 PM
(http://i858.photobucket.com/albums/ab143/demografx/9A561D95-89B8-4193-86BB-BAFC6F0A033E-116-0000000253F4232B.jpg)


Q. DOES $20 REALLY MATTER?

A. YES!!!!


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

$20 fits real nice! C'mon! Feel the power! :)
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 04:11:58 PM
Thanks amijgoro, added to the "Daveman Promo" calculations as well.



See Daveman's post at top of this page.
Title: Re: This may seem like a familiar place.
Post by: Observer on January 09, 2013, 08:20:32 PM
Great PBO, amigjoro and Daveman, I hope to join you before the end of this month! I encourage everyone who is reading my words to step in with a "small"*-donation! Also I would try to get more donations from people who are not taking part on this forum(but they are suffering from POIS also!)

*Nothing is small when we're talking about POIS, because this money could have cost you a lot of your effort, and  everyone of us recognizes that!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 09, 2013, 08:27:18 PM
Great PBO, amigjoro and Daveman, I hope to join you before the end of this month! I encourage everyone who is reading my words to step in with a "small"*-donation! Also I would try to get more donations from people who are not taking part on this forum(and suffering from POIS also!)

*Nothing is small when we're talking about POIS, because this money could have cost you a lot of your effort, and  everyone of us recognizes that!
Title: Re: This may seem like a familar place.
Post by: demografx on January 09, 2013, 08:30:35 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 02:52:41 PM
Our POIS Medical Research Funding Progress!

December 18, 2012:
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)

January 10, 2013:
(http://i858.photobucket.com/albums/ab143/demografx/28D07DC4-48A8-4EDC-8E0B-14003B463659-334-000001804379E935.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!

(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 03:15:07 PM


Daveman Promo
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.


Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 04:17:58 PM

We need the $9,000 $6,700 before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 04:54:02 PM
It is reasonable to assume that - statistically - one individual amongst us -- is able to write That Check -- for $9,000 $6,700! By March 22!

We would all be extremely indebted. As we are to Our Previous Sponsor -- and all of you who gave and will continue to give -- BIG OR SMALL!! EVERY SINGLE DOLLAR COUNTS!!!!

T H A N K    Y O U   A L L!!! :):):):)
Title: Re: This may seem like a familiar place.
Post by: mat780 on January 10, 2013, 05:18:20 PM
Daveman, Thank you very much!!!

Very nice Promo!!!
  :o

Thanks Amijgoro!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 05:24:59 PM
OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......$6,700 more!!




Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)


Title: Re: This may seem like a familiar place.
Post by: demografx on January 10, 2013, 11:12:24 PM

Our POIS Medical Research Funding Progress!

December 18, 2012:
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)

January 10, 2013:
(http://i858.photobucket.com/albums/ab143/demografx/28D07DC4-48A8-4EDC-8E0B-14003B463659-334-000001804379E935.jpg)


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!

(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 11, 2013, 01:06:07 AM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 11, 2013, 02:46:03 AM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

69 days to go!
Title: Re: This may seem like a familar place.
Post by: demografx on January 11, 2013, 01:28:34 PM
Hi everyone,

Don't let all the advertising dissuade you from posting your free-flowing thoughts.

The discussions on this thread can go anywhere and everywhere, respecting, of course, Dave's recent posted guidelines.

As *you* wish.

Best,
Demo & Daveman

Title: Re: This may seem like a familiar place.
Post by: Observer on January 11, 2013, 06:42:09 PM
Well, I have got the word  from one virtual friend that has POIS(but who is also having a great success with niacin since I told him to use it). He is going to donate some amount in February for our/HIS research grant. I haven't even meet him in person, but he is willing to donate after I told him about the initiative(He did not read this forum, only has written few times a long time ago on the NSF- he's "disconnected" from us). My advice would be to ask for help to some of your best friends/relatives so they can donate some small amount before this march deadline. Ask for help to anyone - if you have enough confidence with that special person and you have told him/her your problem, he/she would have no problem to donate some amount, that's for sure -!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 11, 2013, 06:47:26 PM
Wonderful example you set for us all, Observer!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 11, 2013, 07:22:33 PM


We need $6,700 before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 12, 2013, 02:10:37 AM
Well, I have got the word  from one virtual friend that has POIS(but who is also having a great success with niacin since I told him to use it). He is going to donate some amount in February for our/HIS research grant. I haven't even meet him in person, but he is willing to donate after I told him about the initiative(He did not read this forum, only has written few times a long time ago on the NSF- he's "disconnected" from us). My advice would be to ask for help to some of your best friends/relatives so they can donate some small amount before this march deadline. Ask for help to anyone - if you have enough confidence with that special person and you have told him/her your problem, he/she would have no problem to donate some amount, that's for sure -!
Title: Re: This may seem like a familar place.
Post by: demografx on January 12, 2013, 02:12:17 AM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 12, 2013, 03:27:40 PM

(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 12, 2013, 06:40:25 PM
(http://i1190.photobucket.com/albums/z454/MotiveWeight/Make-your-dreams-a-reality-2.gif)
Title: Re: This may seem like a familar place.
Post by: demografx on January 12, 2013, 06:41:55 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 12, 2013, 06:43:54 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 12, 2013, 06:44:48 PM



Daveman Promo
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.



Title: Re: This may seem like a familiar place.
Post by: demografx on January 12, 2013, 06:46:36 PM


We need the $6,700 before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 13, 2013, 12:07:48 AM

OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......$6,700 more!!




Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)



Title: Re: This may seem like a familiar place.
Post by: demografx on January 13, 2013, 02:10:23 AM
(http://gifsandgifs.com/wp-content/uploads/2012/06/TahitiUnderwater1.gif)

Let's make this our First Annual POIS Getaway Retreat.

After we nail the Grant.  :)
Title: Re: This may seem like a familiar place.
Post by: rock27 on January 13, 2013, 11:32:20 AM
Demo, put me down for $ 400!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 13, 2013, 03:29:14 PM
Wow, Rocky! $400!! THANK YOU!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 12:06:28 AM


After receiving Rocky's $400 and Daveman's promo $400, we can change Observer's post once again!... :)


We need $5,900 before this March 22.

We cannot afford to wait another year!



Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 12:18:40 AM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

66 days to go!
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on January 14, 2013, 01:36:19 AM
daveman you said you were willing go up to a thousand right,
i will donate another 600 to before the deadline.
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 14, 2013, 07:51:29 AM
daveman you said you were willing go up to a thousand right,
i will donate another 600 to before the deadline.

WOW, I guess I'm going to have to do it!!  ;)

Thanks CertainlyPOIS! Really!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 10:02:12 AM

Wow, CertainlyPOIS! $600!! THANK YOU!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 10:06:36 AM



After receiving Rocky's $400, CertainlyPOIS' $600 and Daveman's promo $1,000, we can change Observer's post once again!... :)


We need $4,700 before this March 22.

We cannot afford to wait another year!



Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 10:10:33 AM
OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......$4,700 more!!

On average, that's only $71 per day between now and March 22!




Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 10:19:27 AM
(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)
Title: Re: This may seem like a familar place.
Post by: demografx on January 14, 2013, 10:21:31 AM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 14, 2013, 10:26:17 AM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 03:48:05 PM
For your information,

We have 446 members.
About 100 different members have posted in the last month.

For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.


Title: Re: This may seem like a familiar place.
Post by: mat780 on January 14, 2013, 05:17:24 PM
Rock27 and CertainlyPOIS, absolutely amazing!!!

What you've done is a giant leap for all the POIS sufferers!!!

Thank you very much!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 05:37:19 PM
 :) :) :) :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 07:38:40 PM
We have reached 86% of our Research Grant Funding :)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 14, 2013, 11:45:55 PM
Rock27 and CertainlyPOIS, absolutely amazing!!!

What you've done is a giant leap for all the POIS sufferers!!!

Thank you very much!!!


And Daveman matches Rock27 and CertainlyPOIS $ for $ = $2,000!!!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 15, 2013, 12:14:23 AM


Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

65 days to go!

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 15, 2013, 10:17:42 AM
I've been looking at diabetes, because as a result of recent checkups, I have pre-diabetes.

Generally resolvable if caught in time.

But it’s interesting when you think of how diabetes was probably diagnosed, after research, everything is clear, and everybody knows exactly what to do. You read forums, and there are all the tips and suggestions, all about exercise, taking medicines, or insulin, all clear and doable, but there isn’t a cure.

But before research, it wouldn’t have been at all that clear. For years you go without knowing you have it, and when it starts to affect you, you are well into the process, and in some cases damage done. Based on what you feel, you would have tried this and that… if you look diabetes up, there are even catecholamine implications, adrenaline, noradrenaline, dopamine, that kind of stuff. So I’m sure at first, before research people would have tried to attack this system or that system, with remedies usually used for those systems, but those systems are put out of kilter because of another reason, so those other solutions wouldn’t have worked, other than to make you feel better for a while.

Then research found out exactly WHY the systems were out of kilter. Now the whole process of diabetes makes a lot more sense. And many can live normal lives as a result.

Based on how I feel when I have high blood suger, I probably would have tried other things… I still don’t have to take medicines, but with the knowledge of what it is, it is really easy to make improvements on my life and how I feel.

I don’t know why we insist on losing  valuable time to make this move for POIS. Imagine knowing what it is and exactly what causes it. If we ONLY do that, it will be a BIG, BIG jump. We will do much more.

Think about it, it’s even worth taking out a loan. No problem taking out a loan for a car. Take one out for health.

Title: Re: This may seem like a familiar place.
Post by: marquis on January 15, 2013, 10:24:11 AM
Hi everyone, I just registered although I have been reading for a few weeks on this forum. Count me in for another 500$...
Title: Re: This may seem like a familiar place.
Post by: demografx on January 15, 2013, 11:53:24 AM

Wow, marquis! $500!! THANK YOU!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 15, 2013, 01:13:04 PM
marquis, I hope you have an opportunity to visit our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Title: Re: This may seem like a familiar place.
Post by: demografx on January 15, 2013, 01:49:41 PM

Think about it, it’s even worth taking out a loan [to donate to our Research Fund]. No problem taking out a loan for a car.

Take one out for health.



I did.

For $1,250 (charge card payout...same as a loan)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 15, 2013, 02:35:39 PM
I've been looking at diabetes, because as a result of recent checkups, I have pre-diabetes.

Generally resolvable if caught in time.

But it’s interesting when you think of how diabetes was probably diagnosed, after research, everything is clear, and everybody knows exactly what to do. You read forums, and there are all the tips and suggestions, all about exercise, taking medicines, or insulin, all clear and doable, but there isn’t a cure.

But before research, it wouldn’t have been at all that clear. For years you go without knowing you have it, and when it starts to affect you, you are well into the process, and in some cases damage done. Based on what you feel, you would have tried this and that… if you look diabetes up, there are even catecholamine implications, adrenaline, noradrenaline, dopamine, that kind of stuff. So I’m sure at first, before research people would have tried to attack this system or that system, with remedies usually used for those systems, but those systems are put out of kilter because of another reason, so those other solutions wouldn’t have worked, other than to make you feel better for a while.

Then research found out exactly WHY the systems were out of kilter. Now the whole process of diabetes makes a lot more sense. And many can live normal lives as a result.

Based on how I feel when I have high blood suger, I probably would have tried other things… I still don’t have to take medicines, but with the knowledge of what it is, it is really easy to make improvements on my life and how I feel.

I don’t know why we insist on losing  valuable time to make this move for POIS. Imagine knowing what it is and exactly what causes it. If we ONLY do that, it will be a BIG, BIG jump. We will do much more.

Think about it, it’s even worth taking out a loan. No problem taking out a loan for a car. Take one out for health.



I am also pre-diabetic.

Excellent analogy to what we're going through to get REAL research done, and to *finally* (I've been at this circular forum thing since Feb. '07 - my head is spinning with 6 loooooong years of posted...zzzzz......so-called "theories"!) see The Real Thing -- and to.......................... STOP OUR HOMEGROWN/FOREVER-SPECULATING (vs. scientifically researched medical theory) IDEAS ON WHAT POIS IS OR POIS ISN'T! Sorry for shouting, but I do get emotional.

Thank you, Daveman, and Thank You to Our True Supporters, financially and otherwise.
 
Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 02:33:59 PM

OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......$4,700 more!!

On average, that's only $71 per day between now and March 22!




Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 16, 2013, 02:35:05 PM



(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 16, 2013, 02:35:38 PM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 02:39:26 PM

As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.

Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).


Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 02:43:13 PM
Let's PLEASE put POIS *medical* theories/conjecture on hold till we get our Grant funded.

Our aim is to get The Medical Experts - not amateurs like us -  to diagnose us and come up with treatments - for ALL POISers.

Many thanks. I feel very proud and fortunate to be part of your POIS History and Maturation.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 07:49:20 PM

(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)

86% but we still need YOUR HELP.
Title: Re: This may seem like a familar place.
Post by: demografx on January 16, 2013, 07:49:58 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E

 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 07:52:30 PM
For your information,

We have nearly 500 members.
About 100 different members have posted in the last month.

For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.


Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 09:44:06 PM


(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 16, 2013, 09:53:04 PM



We need the $4,000+ before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familar place.
Post by: demografx on January 16, 2013, 11:11:55 PM



(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E


 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 17, 2013, 05:58:37 PM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 17, 2013, 06:12:55 PM



It's January 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.


We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.




Title: Re: This may seem like a familiar place.
Post by: demografx on January 17, 2013, 06:22:17 PM


(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 17, 2013, 06:31:43 PM


We need $4,000+ before this March 22.

We cannot afford to wait another year!

Title: Re: This may seem like a familar place.
Post by: demografx on January 17, 2013, 08:43:50 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 18, 2013, 06:59:20 AM


We need $4,000+ before this March 22.

We cannot afford to wait another year!


So close, any ideas welcome. Promos, whatever. 2 months flies by.

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 18, 2013, 07:02:40 AM
Perhaps as a refresh, you could take a tour of these threads about donating. Procedures, mechanism, structure etc. etc. Questions and answers.

http://poiscenter.com/forums/index.php?board=22.0
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 08:22:04 AM
Thanks, Daveman!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 08:24:16 AM


We need $4,000+ before this March 22.

We cannot afford to wait another year!


So close, any ideas welcome. Promos, whatever. 2 months flies by.



Maybe someone or a group or institution could put up the $4,000 as a loan we pay back?

Like this:

(http://blogs.trb.com/community/news/boca_raton_forum/haven.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 08:29:05 AM


OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......about $4,000 more!!

On average, that's only $71 per day between now and March 22!




Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 08:43:24 AM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

62 days to go!

As Daveman says, 2 months can FLY by. Let's capture the moment!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 09:38:58 AM
(http://i858.photobucket.com/albums/ab143/demografx/123B7954-E086-4226-A8AE-D0E3C6ED87E4-896-000000AD65B627A6.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 05:21:06 PM

Thanks for today's confidential  Donation$!
Title: Re: This may seem like a familiar place.
Post by: Stef on January 18, 2013, 07:52:54 PM

Thanks for today's confidential  Donation$!

Hello, Everyone,

I just feel compelled to say that I AM AMAZED!!!!

The amount of money you've raised -- especially considering the anonymity factor -- is absolutely astonishing!

What a terrific and inspiring group of men you are -- I say that from the bottom of my heart.

You men are going to do it!!!

(And you are keeping NORD's Accounting Department on its toes. Without question -- you are the most active research fund there.)

Here's to conquering this misererable demon! POIS has found its antidote in all of you who have kept the faith and refused to give in to those thoughts that we all have in many situations  -- those doubts, those worries, the "why bother?" thoughts.

And your moderators -- with their nerves of steel -- are absolute blessings. :-)  They've not been afraid to face possible failure (which will not happen!) or to cope with doubting forum members.  They have  both stood in their light -- all the way through.

What a fantastic group you all make!   BE PROUD!

Stef

Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 10:49:21 PM
"Thank you" seems so inadequate, Stef!

You are The Rip Roaring Best in my book!

Demo
Title: Re: This may seem like a familar place.
Post by: demografx on January 18, 2013, 11:02:40 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)


Title: Re: This may seem like a familar place.
Post by: demografx on January 18, 2013, 11:03:47 PM

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 18, 2013, 11:34:39 PM
What is more important than curing your POIS??????

(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS:
PLEASE
Fund Our Only Hope...GIVE Now! (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)





(http://www.wagingpeace.org/images/support/donation_image_main.jpg)



Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)




Its important to note that, even if someone finds an effective treatment tomorrow, there would still be more research to be done. There's not much danger of the research fund going to waste even if someone has a sudden breakthrough. We'd still need to know why the treatment works. (eg. niacin helps some sufferers but we don't know why). We don't know the underlying cause of POIS and I suspect it could be slightly different, in different groups of people (eg something different could be going on in those who have muscle aches and sweats to those who don't). We don't know how prevalent POIS is. There are so many questions to answer beyond finding an effective treatment/cure (although that of course is what we need as soon as possible). This is the tip of the iceberg. Its an opportunity to pave the way not only for our own future health but for everyone who suffers POIS in future. And to raise the profile of POIS to reach those who haven't found our forums yet and to inform their doctors so they recognise the symptoms. As Porke said recently, we are pioneers. No one's going to do it for us, at least not with any urgency. So we have to push this on ourselves.

Title: Re: This may seem like a familar place.
Post by: demografx on January 19, 2013, 12:06:43 AM


(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 19, 2013, 01:25:09 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 19, 2013, 01:26:07 PM



What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)



Title: Re: This may seem like a familiar place.
Post by: demografx on January 19, 2013, 02:23:14 PM


(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)

86% but we still need YOUR HELP.

Title: Re: This may seem like a familar place.
Post by: demografx on January 20, 2013, 12:12:13 AM

Hi everyone,

Don't let all the advertising dissuade you from posting your free-flowing thoughts.

The discussions on this thread can go anywhere and everywhere, respecting, of course, Dave's recent posted guidelines.

As *you* wish.

Best,
Demo & Daveman


Title: Re: This may seem like a familiar place.
Post by: demografx on January 20, 2013, 01:47:31 AM

OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We only need.......about $4,500 more!

Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 20, 2013, 03:53:01 PM

We only need approx. $4,500 before this March 22.

We cannot afford to wait another year!



Title: Re: This may seem like a familiar place.
Post by: demografx on January 21, 2013, 08:37:44 AM
(http://static.tumblr.com/qwvefk8/WmZm5c6th/dreams_really_do_come_true.png)


Thank you for the combined $750 in Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 21, 2013, 04:28:11 PM
(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POIS!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 21, 2013, 04:35:33 PM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 21, 2013, 07:17:41 PM
For those of you who have noticed different numbers posted above: we have decided to remain with actual - rather than pledged/actual - donations.

We're doing great! Let's keep the momentum!
Demo
Title: Re: This may seem like a familiar place.
Post by: demografx on January 21, 2013, 08:44:02 PM
Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

59 days to go!

As Daveman says, 2 months can FLY by. Let's capture the moment!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 01:18:31 AM


(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)





Or click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 01:27:41 AM
If anyone wants to tell the group what led to your donating, that may help motivate others more than my constant whining
: - )

Thanks for asking, Demo!

My motivation is very simple.
I want relief from this monster called POIS!!

If we cannot support ourselves in an attempt to find a treatment (or outright cure) for this malady with a world renown research facility like NORD, then it is a very sad day indeed.

Please... Everyone here!       Donate for your own good!!     NOW!!!
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on January 22, 2013, 05:49:12 AM
Just gave an other 150$ ; We are gonna make it!
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 22, 2013, 10:12:51 AM
Just gave an other 150$ ; We are gonna make it!

Thanks LaPoisse,

We're soooo close. daily donations, here and there, big and small will all contribute to this last $3000.

We're doing so well, and everyone is chipping in.

Let's make it this year, and get started with the real show!!

Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 11:17:15 AM


Thank you, LAPOISSE for your repeat $150 in Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 11:22:58 AM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 11:26:36 AM


Let's make it this year, and get started with the real show!!



Yes!!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 22, 2013, 02:16:41 PM
It's a real pleasure working with you all!

You are all dedicated and willing to make this MAJOR event...happen!

We needed a major rally for March...and you rallied around our Cure-POIS flag!

Thank you!!
Demo
Title: Re: This may seem like a familiar place.
Post by: demografx on January 23, 2013, 04:08:54 PM


OUR "FINAL HOME $TRETCH!"

(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)

Let'$ go, POI$ Team!

We're almo$t there!

Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 23, 2013, 04:14:14 PM
Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by. 57 days to go!

Title: Re: This may seem like a familiar place.
Post by: Daveman on January 24, 2013, 06:32:39 AM
This amounts to $65 per day!

If someone pays $150 that's 2.3 days worth. $500 is a little over a weeks worth.

Help us make it. It would REALLY be a shame to go another year when we are so close.

Imagine, having to wait another year for being short just $1000 (or even $3000)..... Ufff!

Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on January 24, 2013, 07:59:47 AM
Is there anyways to have the sponsor back? Or any other? Or launch a campain? or a mail to members of this forum that maybe not come anymore  but would be glad to help us reach the goal as we are really close now ?
Title: Re: This may seem like a familiar place.
Post by: Daveman on January 24, 2013, 08:55:24 AM
Is there anyways to have the sponsor back? Or any other? Or launch a campain? or a mail to members of this forum that maybe not come anymore  but would be glad to help us reach the goal as we are really close now ?

Well the last sponsor was just one of us, and really had to stretch to help out as he did.

Again many many thanks to him.

Perhaps there are others who are thinking about putting bigger amounts, like $500 or $1000 who could offer to match others up to their limit, sort of like I did.

See if we can get others to help us equal our commitment.

We will put together a couple of mail-outs. That's a good idea. Another campaign like Indiego-go takes too much time I think.

The time left is really so little.


Title: Re: This may seem like a familar place.
Post by: demografx on January 24, 2013, 02:11:21 PM


(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 11:35:48 AM

(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POIS!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 11:36:34 AM


(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: amijgoro on January 25, 2013, 02:39:43 PM
I am in the army where i make 150 dollars a month. I have just donated 100 of those dollars to our research.
I know that even if im feeling great all of a sudden and decide to go out with friends and have a good time for a change its all for not because in a day or two and its in the back of my mind, no matter how much im trying to forget about pois its always going to come back to me. Im so damn sick of feeling that way! I WANT TO LIVE MY LIFE! that is why 2 thirds of my salary is a very small price to pay for a lifetime of happiness.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 04:13:38 PM

Thank you, amijgoro, for your $100 in Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 04:17:55 PM
I am in the army where i make 150 dollars a month. I have just donated 100 of those dollars to our research.
I know that even if im feeling great all of a sudden and decide to go out with friends and have a good time for a change its all for not because in a day or two and its in the back of my mind, no matter how much im trying to forget about pois its always going to come back to me. Im so damn sick of feeling that way! I WANT TO LIVE MY LIFE! that is why 2 thirds of my salary is a very small price to pay for a lifetime of happiness.

Thank you for your INSPIRATION ! !
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 10:00:20 PM
To all contributors thus far: thank you for your patience!

And thank you again for your role in helping to finally make POIS medically understood.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 25, 2013, 11:15:17 PM
To all pledgers.

This is the time for your pledge to really pay off.

Please consider making your pledge real. Now.

Thank you.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 27, 2013, 06:46:18 PM

We cannot afford to wait another year!

(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familar place.
Post by: demografx on January 28, 2013, 01:54:07 AM


What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 28, 2013, 02:03:47 AM

Thanks for today's confidential  Donation$!

Hello, Everyone,

I just feel compelled to say that I AM AMAZED!!!!

The amount of money you've raised -- especially considering the anonymity factor -- is absolutely astonishing!

What a terrific and inspiring group of men you are -- I say that from the bottom of my heart.

You men are going to do it!!!

(And you are keeping NORD's Accounting Department on its toes. Without question -- you are the most active research fund there.)

Here's to conquering this misererable demon! POIS has found its antidote in all of you who have kept the faith and refused to give in to those thoughts that we all have in many situations  -- those doubts, those worries, the "why bother?" thoughts.

And your moderators -- with their nerves of steel -- are absolute blessings. :-)  They've not been afraid to face possible failure (which will not happen!) or to cope with doubting forum members.  They have  both stood in their light -- all the way through.

What a fantastic group you all make!   BE PROUD!

Stef


Title: Re: This may seem like a familiar place.
Post by: demografx on January 28, 2013, 04:05:00 PM


Thank you for your confidential $25 Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 28, 2013, 10:04:02 PM


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Cure POI$!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 28, 2013, 10:39:01 PM
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 Please Click H E R E
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Title: Re: This may seem like a familar place.
Post by: demografx on January 29, 2013, 12:13:14 AM



(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 29, 2013, 01:54:47 AM
Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 days to go!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 29, 2013, 02:25:52 AM
"We cannot afford to wait another year!" --  writes 'Observer', our POIS Video/TV Star!
See TV Videos with Forum Members Observer, Hoping, and Animus:
http://www.youtube.com/user/POISchannel

Title: Re: This may seem like a familiar place.
Post by: demografx on January 29, 2013, 04:24:30 PM

Hi everyone,

[Written about a year ago, but still valid - demo]

I'll be away for the rest of this month with little/no internet access - back in March. Unfortunately, as I've said, this means I won't be able to take on the reddit fundraiser, writing more letters to companies and other things on my to-do list, at least not until I get back.

Lately, I've had a lot of motivation to tackle POIS  I haven't always had this. Sometimes in the past I've been guilty of just wanting to get on with my life and enjoy things when I haven't had POIS symptoms. When I have been in POIS,  well  the motivation hasn't always been there either - that's a symptom of POIS!

There are people on this forum doing a lot of work to further our fight against POIS including several who have put in much more work than me over the years. I wondered a while back if it might be helpful to someone if I posted a message about why I've been so motivated lately. I started drafting a message...

Motivation comes and goes. Right now, I'm seriously motivated to do something about POIS. I haven't always been. I joined this forum in 2007 but I've had long periods of silence along the way. I understand how its possible to not visit the forum for months or read it without posting much.  I thought it might help to give some insights as to why I'm so fired up right now.

1. Dating
2. Being nearly 40
3. A chance to achieve
4. We're getting really close

1. I've been trying to get a relationship off the ground. I signed up to an internet dating site a while ago. Let me tell you there are some fantastic ladies out there. I've been on several dates and met one person in particular recently  I liked a lot. POIS has held me back when it comes to trying to take things beyond friendship. If, like me you've been avoiding seeking a relationship for a long time because of POIS, I can tell you that going on some dates has given me serious motivation to sort POIS out. Why? Because it properly reminds me and makes me realise what I've been missing out on - for years and years.  I'm still unsure whether its fair on the women for me to be on a dating site as a POIS sufferer but of course if I end up getting close to someone on there I'll explain things to them. Actually, a doctor I saw encouraged me to go ahead and start dating again and I was reassured that some people on here manage relationships despite POIS. Some are even married! When my POIS was at its worst, I would agree a relationship was out of the question. I'm at a stage when I'm still unsure but I can see its getting more and more possible.

2. I'm getting pretty close to 40 years old. I'd like to settle and have a  family. It feels like I'm light-years away from that. The clock is ticking and I feel I'm running out of time. If its too much longer, its likely I'll be left trying to start a relationship with a woman who can't have kids anymore. And I'll be a pretty old dad if I manage it.  If you're a lot younger it can be hard to get motivated by this. I know, I was there. Don't be fooled, time wastes quickly when you're in POIS.


3. I grew up used to achieving, in my case academically. 15 years ago POIS turned my life upside-down in ways that you all know it can. 15 years!!! And Demo's had POIS for 30+. In my professional life I haven't achieved what I planned to. I've underachieved  since I've had POIS (although I tell myself that I've done pretty remarkably given I have it). Through these forums I've realised that I have a chance to achieve something great. A chance to to beat POIS, make a difference and improve not only my life but the lives of all POIS sufferers present and future. I want to be able to look back and feel I made an effort and helped a little in the fight against POIS. For a long while I don't think I did make much effort. I wouldn't wish POIS on anyone. It feels good to have a sense of purpose and to try to help.

4. We are closer now than we have ever been to solving POIS and that too is motivating. POIS is more widely known and accepted than it has ever been. In 2007 it was amazing to find the forum and there were some great discussions but things felt a lot more helpless than they do now. We were scrabbling around in the dark. Now we have much clearer directions to go in. At some point I'm certain we're actually going to figure this out. I've been going on about the NORD fund lately. I want to meet that March 31st [2011] deadline. Maybe Prof Waldinger will announce he's solved everything. But I think its unlikely what he finds will work for all of us given the varying success different remedies have had across our group We've got a chance to start research on POIS. With it and the few people that are already looking into POIS, we'll have a much better chance of solving POIS for everyone.

I don't know what your life is like but, based on experience I think I can safely say it would be transformed if you didn't have POIS. I'm sorry if some of this sounds patronising, that's not my intention. You may be skeptical about the NORD fund. You may be right to be. But can you afford to take that risk? Please don't waste time. Fight through this. The time to do something is now.

There's never been a better time because we finally have doctors that are sitting up and taking notice. As I said, I've had POIS for 15 years and some have had it much longer than that. I feel like a huge chunk of that time, especially the early years of POIS was wasted/taken away from me. I don't want you to  reach this stage. For most of the time Demo and others had POIS, the condition didn't even have a name, wasn't recognised by the medical community and there were no fellow sufferers around to turn to. Please don't waste your life or sit back hoping someone else will do something about it and solve your problems for you because the days of POIS being unknown have passed.

Its easy to feel helpless but you're not. Here are some things you can do:

CCconfucius drafted a letter to send to companies. I did too. They're not perfect but they're a good start. Write to companies for outside funding.

Make sure your doctor knows about POIS. He likely won't be able to help but you'll be raising awareness and paving the way to make things easier for other people in future.

At least think about other ways of fundraising and suggest them on the forum

At the risk of being repetitive and losing the message through being long-winded…

Please take a serious look at how much you can donate to the NORD fund. In terms of the potential gains, I'm going to be bold and say that very very little is as important to you right now as resolving your POIS issues. I know especially when you are young, money can be very difficult to come by and to part with. I am not wealthy - not even remotely so. I've had my fair share of financial struggles, not least because of POIS. But trust me, money goes and money comes. If you part with some, you'll have more soon and you'll get by. In a year's time, money you give away now will likely not even register because you'll have found a way to make up for it. You might even be well on your way to being POIS-free. If you solve your POIS you'll earn more, that I am sure of. POIS-free! - don't pass an opportunity to make that real.

As I said, some of these are bold statements. I hope you have read this far because its important for me to acknowledge that I know pretty much nothing about any of you so forgive me if you feel I'm making sweeping statements I'm not qualified to make. But I do know what its like to have POIS for a long time and I know we've never had better opportunities or resources to do something about it. Help yourselves and your loved ones and don't end up looking back wishing you'd done something earlier.



Then a few weeks later Mel wrote...


I just converted my initial $500 pledge into a donation to the NORD fund.

Title: Re: This may seem like a familiar place.
Post by: demografx on January 29, 2013, 04:44:05 PM


Hi Men,

You've got about three more weeks to make your fund goal in 2012.

It's time to turn your pledges into REAL DONATIONS -- there is no comparison between a pledge and a donation. Donations win out. And the ripple effect is guaranteed!

Show your trust, and especially -- show your support for those who have been donating.

WHAT ARE YOU WAITING FOR??

This is how it is for ALL rare disorders -- the research begins with you. You are no different from any other group of people who struggle with a rare disorder in that one specific respect.

Honor yourselves and each other -- and just go for it!


From Stef/nordnurse a year ago.

Title: Re: This may seem like a familiar place.
Post by: demografx on January 30, 2013, 07:07:44 PM
--------------------------------------------------------------------------------------------------------------
This is Daveman's recent mailer that we hope you all received:
--------------------------------------------------------------------------------------------------------------

"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.

We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.

If we don't make it by March 22nd?

Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.

What will the research provide?

We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundreds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filtering through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.

If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.

Will we find the cure with this research?

Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.

We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.

But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.

We are ALMOST THERE!!!

ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!
"

(http://i858.photobucket.com/albums/ab143/demografx/445AD757-BE0F-4158-B8A1-3B1405D17976-559-000000B8133C2B24.jpg)


Click here to PLEASE donate:
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 01:24:06 PM
--------------------------------------------------------------------------------------------------------------
This is Daveman's recent mailer that we hope you all received:
--------------------------------------------------------------------------------------------------------------

"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.

We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.

If we don't make it by March 22nd?

Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.

What will the research provide?

We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundereds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filteing through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.

If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.

Will we find the cure with this research?

Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.

We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.

But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.

We are ALMOST THERE!!!

ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!
"

(http://i858.photobucket.com/albums/ab143/demografx/445AD757-BE0F-4158-B8A1-3B1405D17976-559-000000B8133C2B24.jpg)


Click here to PLEASE donate:
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

MANY Thanks, Daveman! Our first Grant will also ATTRACT: more research, more funding, more attention from YOUR doctor -- because POIS will have been studied by world renowned medical professionals and researchers obtained with NORD's help and its impeccable credentials.
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 01:36:19 PM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 49 days to go!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 02:37:14 PM
(http://img0082.popscreencdn.com/120319745_-vinyl-banner---help-us-reach-our-goal-donate-today-.jpg)
Title: Re: This may seem like a familar place.
Post by: demografx on January 31, 2013, 02:59:27 PM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 05:54:43 PM
If you cannot afford to donate, please don't feel bad: your PARTICIPATION here is very important. Whether you post or not, your presence, your readership, your "statistic" is...most meaningful!

Thank you all for just being here :) :) :)

Title: Re: This may seem like a familar place.
Post by: demografx on January 31, 2013, 06:11:24 PM



(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 07:24:04 PM
If you cannot afford to donate, please don't feel bad: your PARTICIPATION here is very important. Whether you post or not, your presence, your readership, your "statistic" is...most meaningful!

Thank you all for just being here :) :) :)



For more than 30 long years, I had NO forum (even an inferior one :)) to turn to!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 07:32:27 PM
After all these forum years, it is still rewarding to me when a newcomer writes: "I am so glad I found this place. NO ONE else understands POIS." :)

Title: Re: This may seem like a familiar place.
Post by: Hoping on January 31, 2013, 07:53:06 PM
I just donated. Let's get this done people!!
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 08:06:13 PM
Thank you, Hoping!!! -- demo and Daveman
Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 08:18:44 PM



Thank you for your confidential $10.00 in Donation$ today!
Title: Re: This may seem like a familar place.
Post by: demografx on January 31, 2013, 08:22:35 PM



(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)


Please click H E R E now to donate  to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Title: Re: This may seem like a familiar place.
Post by: demografx on January 31, 2013, 08:51:53 PM
Let's Cure POIS. Now.

(http://markarmstrongillustration.files.wordpress.com/2011/10/feature_presentation.gif)

Make "POIS Cured!"
the Feature Presentation - not...


(http://3.bp.blogspot.com/-hg6xU9ZHji0/UEaTtmxovUI/AAAAAAAAAB0/8Q1Dneb6bXU/s1600/Hansel%2Band%2BGretel%2BWitch%2BHunters%2BMovie.jpg)

Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 01, 2013, 12:00:03 AM

I just donated. Let's get this done people!!

Title: Re: This may seem like a familiar place.
Post by: Stef on February 01, 2013, 09:52:15 AM
Hi All,

I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.

So, here's the question --

What is the purpose of fenugreek for treating POIS symptoms?  (I'm not challenging -- only curious!) 

What does it do for some of you -- and, if you know, what seems to be the mechanism?

I know that not all of you have found fenugreek helpful, but for those of you who have been helped by it -- please advise.

My only "medical" experience with fenugreek was with breast-feeding moms who came into the primary care office where I worked.  If their milk supply seemed low, or the baby wasn't "interested," fenugreek was recommended for the mom because it literally makes the breast milk sweeter.  The babies love it -- their feeding would immediately pick up, which in turn, would increase milk production in the mom.

And the moms all smelled like maple syrup from the fenugreek!!  I'd know immediately if a particular breast-feeding mom was taking fenugreek because of that smell (which was pleasant).

So -- I'm interested in what it does for POIS.

Thank you! :-)

Stef
Title: Re: This may seem like a familiar place.
Post by: Observer on February 01, 2013, 10:44:30 AM
Hi All,

I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.

So, here's the question --

What is the purpose of fenugreek for treating POIS symptoms?  (I'm not challenging -- only curious!) 

What does it do for some of you -- and, if you know, what seems to be the mechanism?

I know that not all of you have found fenugreek helpful, but for those of you who have been helped by it -- please advise.

My only "medical" experience with fenugreek was with breast-feeding moms who came into the primary care office where I worked.  If their milk supply seemed low, or the baby wasn't "interested," fenugreek was recommended for the mom because it literally makes the breast milk sweeter.  The babies love it -- their feeding would immediately pick up, which in turn, would increase milk production in the mom.

And the moms all smelled like maple syrup from the fenugreek!!  I'd know immediately if a particular breast-feeding mom was taking fenugreek because of that smell (which was pleasant).

So -- I'm interested in what it does for POIS.

Thank you! :-)

Stef

Fenugreek worked on me certainly well. It helped to reduce my cognitive symptoms, but it also reduced the "pleasure feeling" of Orgasm - It was a very weak orgasm in that sense. Hope this helps!
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 01, 2013, 01:05:41 PM
Hi All,

I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.

So, here's the question --

What is the purpose of fenugreek for treating POIS symptoms?  (I'm not challenging -- only curious!) 


Yes sorry I should've told you I answered it in a thread we've made for fenugreek here http://poiscenter.com/forums/index.php?topic=27.msg8576#msg8576

But the gist of my answer is that we don't know exactly how it works. I suspect it works directly on inflammation for me in a way that aspirin hasn't been able to, but it also seems to have some hormonal effect. There have been studies on its ability to help diabetes as well by lowering glucose levels and perhaps it could help us that way.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 01, 2013, 06:47:52 PM

Some historical posts (since 2007) about fenugreek and POIS:

http://tinyurl.com/b435956
Title: Re: This may seem like a familiar place.
Post by: Stef on February 02, 2013, 01:24:49 AM
Thank you all for the information. Fenugreek is so interesting! 

After reading your replies, then looking at the older posts from the NSF forum that Demo supplied in that link, I did a PubMed search.

There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.

(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)

Maybe most importantly as related to POIS, there are indications that it inhibits the production of certain inflammatory cytokines.  Here's a link to an abstract of a 2012 article by a group of pharmacologists from the School of Pharmacy and Pharmaceutical Sciences, Kanazawa University, in Japan -- http://www.ncbi.nlm.nih.gov/pubmed/20979021.

(As an aside, we do need inflammatory cytokines -- they do serve a purpose. It's when they go into overdrive that they become a problem.)

The US is so far behind other countries in the study and understanding of herbs -- probably because these aren't considered "drugs" and therefore, not financially worthwhile for study.  There's no Big PHARMA funding for herbs in the US.

Vincent M -- it sounds like you got it right about the anti-inflammatory effect.

Some cautions about fenugreek (what would you expect from a nurse?!)  If you're allergic to chick peas, don't take fenugreek! (They are similar in chemistry.) And -- it can increase clotting time in some (meaning, it can interfere with the blood clotting process, possibly leading to bleeding episodes -- but this is very rare).

This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)

Stef
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 02, 2013, 01:56:21 PM

There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.

(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)


I also experienced some of these weaker orgasms when I first started fenugreek(I even had a dry orgasm that was about 10% the pleasure and duration of a normal orgasm for me). The shorter the "o" was the less POIS symptoms I had. The way I see it this points to some hormonal effect.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 02, 2013, 02:04:21 PM

This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)

Stef


 :) :) :)
Title: Re: This may seem like a familiar place.
Post by: Daveman on February 02, 2013, 03:22:32 PM
Two times now I have tried something and it seems to be effective, both times the same thing happened.

As you all know, niacin helps me a lot, but I still get joint and muscle swelling and soreness especially in the first days of POIS.

Like today. Last night was day "0". I think I waited a little long from the peak of the flush (about 1.5 hrs), and so POIS came through
a little more than usual. I slept poorly, and in the morning my back ached and muscles and joints were sore.

So I took a B Complex tablet nothing special, not a particularly high dose, just your garden variety B-Complex, and 1000mg Vitamin-C
In about 2 hrs my muscle and joint soreness went away. And I've been pretty good since then (12 hrs later).

My first day (like today) usually has a very light tinge of POIS in the background, but usually so little that mosst of the time I forget that I am in POIS.

So rather than take B-Complex before daily, I take one on day 1 and maybe another on day 2.

Sometimes I will take a B-Complex (just one per day) 3 days and 3 days before I plan to have sex. This somehow makes me "hornier" during the act
2 days later and gives me more stamina. However the strange thing is, if I take B-Complex every day for a week before sex, I have good stamina, but
my POIS is much worse, despite taking niacin.

So it's a balance. B-Complex 2 and three days before, niacin one hour before and B-Complex the day after, and perhaps the second day after.

For me a great combination, and has me all but POIS free.

Title: Re: This may seem like a familiar place.
Post by: amijgoro on February 02, 2013, 06:20:21 PM
We have struggled with this illness quite some time now and achieved a lot with the help of our amazing members.
The nord research is a big result of our combined effort in the battle against Pois.
Lets continue the fight to free ourselves and live up to our full potential.
I am volunteering to be this months sponsor. Every donation that comes in will be matched. Lets reach the 33,500 and get this research started!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 02, 2013, 10:23:07 PM
(http://www.gifs.net/Animation11/Holidays/Party/Confetti_canon.gif)


I am volunteering to be this month's sponsor.

Every donation that comes in will be matched. Lets reach the $33,500 and get this research started!


Thank you, amijgoro, for your great words about funding.

And your February, 2013 Sponsorship!


WE ALL THANK YOU, AMIJGORO!!! :) :) :)

(http://3.bp.blogspot.com/_cIEJkD82e60/TJybLey_mTI/AAAAAAAAD5A/FWvImYRHNJw/s1600/falling+confetti.jpg)(http://3.bp.blogspot.com/_cIEJkD82e60/TJybLey_mTI/AAAAAAAAD5A/FWvImYRHNJw/s1600/falling+confetti.jpg)


Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 01:52:50 AM
(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)
 Please Click H E R E and our February Sponsor (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
Title: Re: This may seem like a familar place.
Post by: demografx on February 03, 2013, 02:00:20 AM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 02:04:11 AM

(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POI$!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 02:18:47 AM
Thank you all for the information. Fenugreek is so interesting!  

After reading your replies, then looking at the older posts from the NSF forum that Demo supplied in that link, I did a PubMed search.

There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.

(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)

Maybe most importantly as related to POIS, there are indications that it inhibits the production of certain inflammatory cytokines.  Here's a link to an abstract of a 2012 article by a group of pharmacologists from the School of Pharmacy and Pharmaceutical Sciences, Kanazawa University, in Japan -- http://www.ncbi.nlm.nih.gov/pubmed/20979021.

(As an aside, we do need inflammatory cytokines -- they do serve a purpose. It's when they go into overdrive that they become a problem.)

The US is so far behind other countries in the study and understanding of herbs -- probably because these aren't considered "drugs" and therefore, not financially worthwhile for study.  There's no Big PHARMA funding for herbs in the US.

Vincent M -- it sounds like you got it right about the anti-inflammatory effect.

Some cautions about fenugreek (what would you expect from a nurse?!)  If you're allergic to chick peas, don't take fenugreek! (They are similar in chemistry.) And -- it can increase clotting time in some (meaning, it can interfere with the blood clotting process, possibly leading to bleeding episodes -- but this is very rare).

This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)

Stef


I was pleasantly surprised that my local pharmacy's computer can measure the interaction effects between fenugreek and other prescription drugs. Maybe everyone else's pharmacy can do that as well, if there is interest in experimenting.

Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 02:23:18 AM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 49 46 days to go!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 03:14:19 AM
Two times now I have tried something and it seems to be effective, both times the same thing happened.

As you all know, niacin helps me a lot, but I still get joint and muscle swelling and soreness especially in the first days of POIS.

Like today. Last night was day "0". I think I waited a little long from the peak of the flush (about 1.5 hrs), and so POIS came through
a little more than usual. I slept poorly, and in the morning my back ached and muscles and joints were sore.

So I took a B Complex tablet nothing special, not a particularly high dose, just your garden variety B-Complex, and 1000mg Vitamin-C
In about 2 hrs my muscle and joint soreness went away. And I've been pretty good since then (12 hrs later).

My first day (like today) usually has a very light tinge of POIS in the background, but usually so little that mosst of the time I forget that I am in POIS.

So rather than take B-Complex before daily, I take one on day 1 and maybe another on day 2.

Sometimes I will take a B-Complex (just one per day) 3 days and 3 days before I plan to have sex. This somehow makes me "hornier" during the act
2 days later and gives me more stamina. However the strange thing is, if I take B-Complex every day for a week before sex, I have good stamina, but
my POIS is much worse, despite taking niacin.

So it's a balance. B-Complex 2 and three days before, niacin one hour before and B-Complex the day after, and perhaps the second day after.

For me a great combination, and has me all but POIS free.



Your success is an inspiration. Even though your POIS treatment and mine are different, and don't work for everyone, there is comfort in seeing a physiological treatment that proves "something biological" is going on with us and...it's NOT "all in our heads"...as too many doctors wrongly believe.

Title: Re: This may seem like a familiar place.
Post by: mat780 on February 03, 2013, 08:37:03 AM
I've just donated $100.

Amijgoro, you are AWESOME! Thank you very much for your sponsorship!!!

People, let's do it!!! Together we can!!!


Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 09:23:09 PM
Mat, Thank You for your $100 in Donation$ today!

Title: Re: This may seem like a familiar place.
Post by: demografx on February 03, 2013, 11:49:35 PM
(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif)        We Are Soooooooo  Close!

 Please Click H E R E and our February $ponsor (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 04, 2013, 11:27:05 PM

i just donated the 600 hundred to match that daveman will match.


CertainlyPOIS, Thank You for your $600 in Donation$!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 04, 2013, 11:35:21 PM

I'm 100% sure we can make it for this year ; we can't afford to wait another year, we are very close ; there is 533 members in here ; it's 10$ each and then we have a real chance to understand how POIS work and how he could be treated to offer all of us a better life ; What is more important ?

If i'm sure we do it this year i'm OK to give (and I promise i'll do it) an other 300$

What you guys can put for the last shot ? even 5$ it's OK....i'm sure we can virtualy gather the 4500$ (actually it's 4200$ now)

Lets make a list :

LAPOISSE : 300$

Title: Re: This may seem like a familiar place.
Post by: demografx on February 04, 2013, 11:38:44 PM
We cannot afford to wait another year!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 04, 2013, 11:42:45 PM


(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 05, 2013, 04:09:40 PM

Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 49 46 44 days to go!
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on February 05, 2013, 05:01:33 PM
Great!

What is the "february sponsor" thing?

Title: Re: This may seem like a familiar place.
Post by: demografx on February 05, 2013, 06:26:51 PM
Great!

What is the "february sponsor" thing?




I am volunteering to be this month's sponsor.

Every donation that comes in will be matched. Lets reach the $33,500 and get this research started!


Title: Re: This may seem like a familiar place.
Post by: PBO on February 06, 2013, 04:13:47 AM
Hi,

I wanted to let the sponsor (amijgoro) know I just donated 250$ to NORD.

Thank you very much Amijgoro for your February sponsorship.

PBO
Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 06:50:50 AM

PBO, Thank You for your $250 in Donation$!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 07:53:59 AM

amijgoro, Thank You for your PBO sponsorship, magically turning PBO's $ now into $500 in Donation$!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 08:03:52 AM
(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POI$
Now!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 03:36:52 PM
Let's lock in 2013 - now -  let's finish our funding, and be assured that POIS will begin a true, scientific, medical investigation in 2013.

Not 2014.

Not 2015.

Now!

We deserve it!

Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 06:02:21 PM
(http://i858.photobucket.com/albums/ab143/demografx/27E17B51-34FA-4BF1-BE35-56F46526BA65-835-000000E80ED45DB2.jpg)
       YOU (we :) )GUYS ARE GREAT!

*************** 92% OF GOAL! ***************

(1) We broke the $30,000 barrier!
(2) We broke the      90%  barrier!

*************************************************


With our February sponsor, amijgoro - who will match every $$$ you give!! --  it's our opportunity to go over.

WE CAN MAKE IT FOR 2013!!!!!!!

 :) :) :)


Title: Re: This may seem like a familiar place.
Post by: Vandemolen on February 06, 2013, 06:18:53 PM
I wanted to let the February sponsor (Amijgoro) know I just donated 50$ to NORD.

Thank you very much Amijgoro for your February sponsorship!

First I donated 450$. But 500$ in total is a more round figure. :)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 06, 2013, 06:27:36 PM
Thank you, Repeat Donor Vandemolen!! $50 = $100 !!!
Title: Re: This may seem like a familar place.
Post by: demografx on February 06, 2013, 09:50:36 PM

What does "DONATE FUNDS" mean? Why should I donate? What is it all about???  
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
Title: Re: This may seem like a familiar place.
Post by: mellivora on February 07, 2013, 01:45:29 PM
Hi folks,
Its been my intention for a while to do another crowd-sourced funding campaign. I intended to do this through the site http://www.medstartr.com which seems ideal for it.

However, this has been on my to-do list for some time now and I'm finding I just don't seem to have the energy to do it right now, sorry. I did begin to put something together but even though tackling POIS should be my biggest priority and trump everything else on my to do list, I'm struggling to put time into it amongst other personal things at the moment. If someone else wants to launch a campaign through medstartr please do and I'll happily try to collaborate as best I can.

The best I feel can manage for now is another $500 donation which has just gone in.

Dear NORD, soon its time to show us what you've got ;)

Great effort by everyone on here lately. This is definitely our year. Demo, Daveman and Stef are legends and I've incredible respect and gratitude for the many other positive and pro-active people here. Whether you feel your contribution is big or small, whether it has been monetary, informative or just encouraging, you've made a difference. Thanks  :)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 07, 2013, 02:37:48 PM
Repeat Donor and Beloved Forum Activist, mellivora, Thank You for your $500 ($1,000 with $ponsor, amijgoro!) in Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 07, 2013, 03:06:39 PM
(http://i858.photobucket.com/albums/ab143/demografx/5E69FFA6-6A4B-4AB3-AD2C-544EDF84D5B8-375-000000785FB65202.jpg)
       YOU (we :) )GUYS ARE GREAT!

******** 95% OF GOAL! ********
Title: Re: This may seem like a familiar place.
Post by: demografx on February 07, 2013, 03:13:12 PM

(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif)        We Are Soooooooo  Close!

 Please Click H E R E and our Very Generous February $ponsor, amijgoro, (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
Title: Re: This may seem like a familiar place.
Post by: Stef on February 07, 2013, 05:18:26 PM
I wanted to let the February sponsor (Amijgoro) know I just donated 50$ to NORD.

Thank you very much Amijgoro for your February sponsorship!

First I donated 450$. But 500$ in total is a more round figure. :)

Hi Vandemolen!

I just love your comment, "First I donated 450$. But 500$ in total is a more round figure."

It is such an endearing and really sweet way of advising that you just donated $50!  :-)

Stef

Title: Re: This may seem like a familiar place.
Post by: demografx on February 07, 2013, 06:57:12 PM
From nordnurse ... very interesting article about Cholera...do you see the similarity to POIS and our battle to refrain from "speculative theories" and "finding NORD science instead" that we see here vs. elsewhere?
Thank you, Stef!!

"Cholera Confusion, circa 1832 (headline)
As cholera first tore through Europe in the mid-19th century, people tried anything to prevent the deadly disease. Then science stepped in."

By Dan Cossins | February 1, 2013
http://www.the-scientist.com//?articles.view/articleNo/34113/title/Cholera-Confusion--circa-1832/
Title: Re: This may seem like a familiar place.
Post by: demografx on February 07, 2013, 09:42:08 PM
(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 08, 2013, 01:47:01 AM


Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 49 46 44 41 days to go!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 08, 2013, 10:36:15 AM

(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
 Please Click H E R E
 (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 08, 2013, 05:11:43 PM
Anonymous, Thank You for your $22.90 in Donation$ today!
Title: Re: This may seem like a familiar place.
Post by: Observer on February 08, 2013, 06:55:22 PM
Well, that was not really an "anonymous donation". I know who is behind it, and he is no other than an hungarian "virtual friend" of mine(he also suffers from POIS, but he is getting excellent results with niacin). I contacted him via social-network, and I asked him to donate for our NORD fund. If someone of you don't have enough money/ funds, then you could choose this way to contribute. Ask for some of your friends/relatives to donate a small amount for our POIS research grant, we are very close, and multiple small-donations will make us achieve our goal!

Also, I would like to thank amigjoro for his amazing push and initiative!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 08, 2013, 10:14:39 PM
Well, that was not really an "anonymous donation". I know who is behind it, and he is no other than an hungarian "virtual friend" of mine(he also suffers from POIS, but he is getting excellent results with niacin). I contacted him via social-network, and I asked him to donate for our NORD fund. If someone of you don't have enough money/ funds, then you could choose this way to contribute. Ask for some of your friends/relatives to donate a small amount for our POIS research grant, we are very close, and multiple small-donations will make us achieve our goal!

Also, I would like to thank amigjoro for his amazing push and initiative!

Thank you, Observer!

Excellent idea: let's continue to reach out to friends, social networks, family, and...institutions/organizations.

Title: Re: This may seem like a familiar place.
Post by: demografx on February 09, 2013, 07:44:32 PM
Thank you, Anonymous Donor!! $250 = $500 !!! thx to $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 09, 2013, 07:55:08 PM
(http://i858.photobucket.com/albums/ab143/demografx/F332F003-4ADE-4803-9E55-BCFDCCD77778-900-0000006C29817B2A.jpg)

Includes pledges and sponsorship :)

Title: Re: This may seem like a familiar place.
Post by: demografx on February 09, 2013, 07:58:20 PM
98% of POIS Research Funding Goal achieved!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 09, 2013, 08:06:36 PM
Our deadine: 40 more days to finish funding. Then we will finally be part of NORD's 2013 Research Program. Thank you everyone, we are all committed to taking this next major leap to hopefully wipe the scourge POIS _off_ the medical map!
Best to all,
Demo

Title: Re: This may seem like a familiar place.
Post by: Daveman on February 10, 2013, 05:29:40 PM
We are so close you can smell it!!

I think we only need like $650 more this month which would be duplicated by this month's sponsor.

Very little!!

Come on everybody, one last push!
Title: Re: This may seem like a familiar place.
Post by: mellivora on February 10, 2013, 06:27:59 PM
How amazing is it going to be to read here that we've made the total? A M A Z I N G ! How good will you feel knowing you played a part in getting us to the total?  :)

Come on folks. We all deserve it! I'd like to read that we've made it this week and I can't believe you don't want to read that too.

Even a small donation helps, especially as we are so close and we are lucky enough to have an amazing sponsor to double whatever you donate. Giving has been scientifically proven to make people happier (that's actually true!) and the best bit is you're effectively giving to yourself too so you can't lose!

We all want to know what POIS is. It might be a bit different in different people. A scientific study is the best way to find out and we're very close to launching one. For you, for us and for every future POIS sufferer. We are making history. What we do now paves the way for future POIS victims not to have to suffer like we have. I know I wouldn't wish POIS on anyone. Be part of getting a POIS research programme underway. There's no better time than now to donate. You'll feel happy knowing you did what you could and played a part :)
Title: Re: This may seem like a familiar place.
Post by: mellivora on February 11, 2013, 05:21:47 AM
We are so close you can smell it!!

I think we only need like $650 more this month which would be duplicated by this month's sponsor.

Very little!!

Come on everybody, one last push!

$650.....

I'm in for another $50. Just done it. Who's going to join me? If 12 more people put in $50 we're there. If 6 people put in $100 we're there.

Will you miss $50 you spend now in a year's time? How about in two year's time? Might you be on your way to knowing what POIS is and be POIS-free in two year's time? If we make that total you might :) If you spend $10 less per week on food or fuel or a night out and do this for just one month. That pays for your donation.

Ok enough of the hard sell from me. I'm done now. I know that I don't like pushy sales people in shops. Whatever you feel you can give, even if its $10 in total, that's great. I'm just a fellow pois sufferer trying to sort my life out for me and everyone I love. I'd like you to be POIS-free and I'd like future people who find themselves with POIS to not have to go through what I've been through. Not bad value for $650.

Just so its handy, here's the link to the donations page. Just click and select "Post Orgasmic Illness Syndrome (POIS)" from the drop-down menu where it says 'Please select a research fund'.
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3 (https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Title: Re: This may seem like a familiar place.
Post by: Observer on February 11, 2013, 10:31:00 AM
I just donated another 70$ to the NORD research fund, so 530$... Come on everyone, I expect a rain of micro-donations from all people who suffer from POIS and have been with our group sharing their accounts... It's now or never, don't wait for anyone to take the first step; Take you that step!!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 11, 2013, 08:03:54 PM
Thank you, Observer!! $70 = $140 !!! thanks to our $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 11, 2013, 08:09:04 PM

Thank you, mellivora!! $50 = $100 !!! thanks to our $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 11, 2013, 08:22:55 PM
I just donated another 70$ to the NORD research fund, so 530$... Come on everyone, I expect a rain of micro-donations from all people who suffer from POIS and have been with our group sharing their accounts... It's now or never, don't wait for anyone to take the first step; Take you that step!!

I hope everyone is listening!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 11, 2013, 08:25:27 PM
We are so close you can smell it!!

I think we only need like $650 more this month which would be duplicated by this month's sponsor.

Very little!!

Come on everybody, one last push!

$650.....

I'm in for another $50. Just done it. Who's going to join me? If 12 more people put in $50 we're there. If 6 people put in $100 we're there.

Will you miss $50 you spend now in a year's time? How about in two year's time? Might you be on your way to knowing what POIS is and be POIS-free in two year's time? If we make that total you might :) If you spend $10 less per week on food or fuel or a night out and do this for just one month. That pays for your donation.

Ok enough of the hard sell from me. I'm done now. I know that I don't like pushy sales people in shops. Whatever you feel you can give, even if its $10 in total, that's great. I'm just a fellow pois sufferer trying to sort my life out for me and everyone I love. I'd like you to be POIS-free and I'd like future people who find themselves with POIS to not have to go through what I've been through. Not bad value for $650.

Just so its handy, here's the link to the donations page. Just click and select "Post Orgasmic Illness Syndrome (POIS)" from the drop-down menu where it says 'Please select a research fund'.
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3 (https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)

Mellivora, thank you for being a longterm loyal friend.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 11, 2013, 08:35:13 PM
We are so close you can smell it!!

I think we only need like $650 more this month which would be duplicated by this month's sponsor.

Very little!!

Come on everybody, one last push!

Daveman: thank you forever for creating a Forum With Freedom to advance the Medical Science of POIS!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 12, 2013, 12:18:46 PM


(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif)        We Are Soooooooo  Close!

 Please Click H E R E and our Very Generous February $ponsor, amijgoro, (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 12, 2013, 12:31:20 PM
Thank you, Anonymous Donor #1 today!! Your $70 = $140 now!!! thanks to our $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 12, 2013, 12:32:39 PM
Thank you, Anonymous Donor #2 today!! Your $50 = $100 now!!! thanks to our $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: mellivora on February 12, 2013, 04:05:32 PM
I can account for at least one of those anonymous donors - a pretty amazing friend of mine donated today. I shall pass on your thanks 8)

Veeery clooose now! I'd still love to get there this week.

Come on peeps less celibate, more celebrate! Just a bit more. You could be the one who sends us over the finish line  ;)
Title: Re: This may seem like a familiar place.
Post by: marquis on February 12, 2013, 04:45:55 PM
I just donated another $150 to the fund, let's make this happen.

Yesterday I ejaculated and thankfully having only 60 - 70% cognitive symptoms (social anxiety, dizziness, brainfog) because I had a good flush before with niacin.

I always have some dark circles and quiet baggy eyes, but in POIS it becomes unbearable and I could easily play a character in Night Of The Living Dead.
At work today a lot of people where asking if I'm ill or didn't sleep for the last three days.

I really hope that we achieve the goal and that the issue mentioned above gets covered as well in the research...

Best wishes to all of you from Germany,
marquis
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on February 12, 2013, 05:48:18 PM
So what is the count ?

If we are not to far, i'll maybe close the thing

Congrats to all of us
Title: Re: This may seem like a familiar place.
Post by: demografx on February 12, 2013, 06:53:00 PM

Thank you, marquis!! Your $150 = $300 now!!! thanks to our $ponsor, amijgoro!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 12, 2013, 06:55:50 PM
So what is the count ?

If we are not to far, i'll maybe close the thing

Congrats to all of us

Teriffic, LAPOISSE! I counted you in that "temperature chart" that I made. We're counting the REAL (not pledged $$$) and will let you know immediately! :) :) :)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 06:51:06 AM

I can account for at least one of those anonymous donors - a pretty amazing friend of mine donated today. I shall pass on your thanks 8)


Thanks for doing that, Mel!


Veeery clooose now! I'd still love to get there this week.


We might!!


Come on peeps less celibate, more celebrate! Just a bit more. You could be the one who sends us over the finish line  ;)


Haha!
LESS CELIBATE
MORE CELEBRATE

That could be our Forum Theme! ;D
Title: Re: This may seem like a familiar place.
Post by: Daveman on February 13, 2013, 07:15:39 AM
Well folks... I´m not as good at the graphics and fanfare as Demo, and I'm afraid we may have to wait a day or two, he's "unlocking" his computer right now. One of those mentally ill hackers that only want to do bad in this world.

BUT, IT SEEMS WE HAVE NOT ONLY MADE THE GOAL, BUT GONE OVER!!

We are waiting for a solid pledge and the finals of the last sponsorship to all go through, but these are pretty sure numbers.

And it looks like our Grand Total, everything in is $35373.90

Can you believe it?

We will be starting the process THIS YEAR!!

Congratulations every one. You all pulled together this last little while and all have brought it through.

I hope you can all feel proud for what we have done, and now, our hopes are pointed at another level all together
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 07:44:34 AM
(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 07:54:37 AM
(http://www.picdesi.com/upload/comment/congrat/congratulation-029.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 12:01:10 PM
(http://jennykellerford.files.wordpress.com/2010/11/congratulation_graphics_2.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 12:22:44 PM
(http://www.politisite.com/wp-content/uploads/2012/12/FireworksAnimated.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 12:24:42 PM
THANK YOU DAVEMAN
THANK  YOU STEFANIE

IT WOULDN'T HAVE HAPPENED WITHOUT YOU
Title: Re: This may seem like a familiar place.
Post by: Stef on February 13, 2013, 12:46:30 PM
Well folks... I´m not as good at the graphics and fanfare as Demo, and I'm afraid we may have to wait a day or two, he's "unlocking" his computer right now. One of those mentally ill hackers that only want to do bad in this world.

BUT, IT SEEMS WE HAVE NOT ONLY MADE THE GOAL, BUT GONE OVER!!

We are waiting for a solid pledge and the finals of the last sponsorship to all go through, but these are pretty sure numbers.

And it looks like our Grand Total, everything in is $35373.90

Can you believe it?

We will be starting the process THIS YEAR!!

Congratulations every one. You all pulled together this last little while and all have brought it through.

I hope you can all feel proud for what we have done, and now, our hopes are pointed at another level all together


Hi Everyone!

Daveman -- I've told you and demo from the beginning that I was certain you guys were going to go over the minimum!!! (I might have even posted that somewhere.)


Congratulations!!!!!  Felicidades!  Gefeliciteerd! Gratullunk! Вітаємо! מזל טוב! Herzlichen Gleckwunsch! تهانينا! Parabins! Tillykke! поздоровляю! Συγχαρητήρια!

Stef
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 13, 2013, 01:39:28 PM
Now that we know the research study will be happening relatively soon perhaps we should start determining how many of us would be able to travel, say on a plane to another country, in order to participate in the research. I'm assuming the study will have to be performed in one place where the test subjects would have to travel to. Another factor would be the length of time the study would require the subjects to remain in that area.

I would have the time, but most likely not the money, to travel on a plane and stay at a hotel for instance.

I sort of recall a thread in which we discussed this topic. I'll have to go back and look. *edit* - Couldn't find it.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 13, 2013, 03:17:06 PM
In addition we could attempt to compile more data on the location of our members. Perhaps those of us who don't want to reveal what state or city we're near could pm that info to mat780 if he's able to add changes to his POIS map, which is located here: https://sites.google.com/site/poiswebsite/pois-map

We have the data Mellivora collected on which countries we're in as well which could be useful. That list of our #s by country is at this thread and in case anyone wants to add their country who hasn't yet they can post it here: http://poiscenter.com/forums/index.php?topic=299.msg3783#msg3783

So far it looks like we have 34 members' country info and 28 members on the map.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 13, 2013, 06:22:07 PM
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 09:15:11 PM
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.

Interesting question for Stef, Vince
Title: Re: This may seem like a familiar place.
Post by: demografx on February 13, 2013, 09:17:05 PM

THANK YOU DAVEMAN
THANK  YOU STEF

IT WOULDN'T HAVE HAPPENED WITHOUT YOU!!
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on February 14, 2013, 03:51:08 AM
To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?

We could organise informations like :

-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?

I know we answered to something comparable for some spanish research...Maybe we can have some result?

Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
 so far...
Anybody smart with computer to do a quick sharable questionary?
Title: Re: This may seem like a familiar place.
Post by: Daveman on February 14, 2013, 06:43:25 AM
To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?

We could organise informations like :

-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?

I know we answered to something comparable for some spanish research...Maybe we can have some result?

Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
 so far...
Anybody smart with computer to do a quick sharable questionary?

We've attempted a couple of surveys in the past, for this very reason, try to get information together for researchers beforehand, so they are not spending the research money to do it all themselves.

Our best effort got 33 responses. So it sounds like a good idea, but difficult to implement.

I don't know, perhaps with the research being certain, we could get a better response!

And actually we are still not "officially" over the minimum, but practically we are. We still have to finalize sponsorship commitments etc. but that's all really a matter of "paperwork".

Title: Re: This may seem like a familiar place.
Post by: Stef on February 14, 2013, 05:08:32 PM
THANK YOU DAVEMAN
THANK  YOU STEF

IT WOULDN'T HAVE HAPPENED WITHOUT YOU

Demografx -- I'd say that you played a rather HUGE roll in making this happen. :-)  You're a wonderful motivator!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 14, 2013, 06:34:21 PM
Thanks for the Valentine's Day sentiment, Stef!

xo
Title: Re: This may seem like a familiar place.
Post by: Stef on February 14, 2013, 06:40:50 PM
I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.

Interesting question for Stef, Vince

Hello Vincent Marcus and Everyone!

I'll answer your questions as concisely as possible.

NORD's research grant program does sponsor studies with animals ("pre-clinical") and with human studies ("clinical").  

Many disorders really do need to be studied in animals first.

For example, if there is a known genetic defect (which would have first been identified from human patients), scientists will create a genetically-engineered mouse (or monkey, or even a dog -- there are specific biological reasons as to what type of animal is best). Those animals become the basis for later clinical trials in humans. The animals are bred with the faulty gene, and then studies can be done on the animals to try to find the best way to correct that gene -- or to provide the missing protein or an enzyme to reverse the condition.  

(This just happened with a NORD grant, involving a horrendous neurological condition.  NORD's MAC awarded the same researcher from Northwestern University four grants -- four years in a row (very unusual!).  They knew he was on to something.  His study, which also involved his co-investigators, was recently published -- they were able to reverse that terrible disease in the mouse models that were bred using a specific medication! The lead researcher was Dr. Puneet Opal -- here's a press release about that study, described as "ground-breaking." http://www.sciencedaily.com/releases/2011/10/111016132040.htm.)

Clinical trials of that drug in humans with this condition will be starting within the year. It really is ground-breaking!

But with POIS -- nothing is known scientifically.  The offending agent(s) that cause such misery are a complete mystery. Possibilities include an auto-immune reaction, an allergy, a neurological condition, a urological condition, a genetic mutation, etc.  The possibilities are endless.

(Although I think gynecology can be ruled out). :-)

So the first step would likely be to try to identify what is causing the cascade of overwhelming POIS symptoms -- and how does it get into the circulatory system in the first place? Semen should only exist (biologically-speaking) within a man's genital tract -- it starts in the prostate and leaves through the tip of the penis.  This is supposed to be an air-tight system with no barrier leaks -- semen should go nowhere but out!

I suspect that your study will first involve men with POIS, along with control subjects (men without POIS).  You likely will not need to travel to the country where the research will be done if "only" tissue specimens are needed. All sorts of human tissues -- blood, semen, saliva -- even skin and hair -- can be specially shipped to the researcher's lab even when the lab is in another country across the sea.  And-- the cost of all that is usually picked up by the researcher's lab.

VM -- I'm only guessing here, but I'm inclined to think that this research grant will involve human samples (at the least) and possibly direct, one-on-one human contact with the researcher. If any human tissue is involved it is referred to as a "clinical" study, just FYI.

If I am wrong -- that this study will focus on an animal model of some sort (again, I would be surprised, but I'm not a scientist and not a member of our MAC) -- this is what I want to impart to all of you.  Trust the process!  

I can't stress this enough.  NORD's MAC will be your absolute best advocates.  Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.

The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period.  Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential.  The award recipient will be determined by our MAC in mid-late November, 2013.  It's a long process -- but there is NO OTHER WAY TO DO IT.  

In the meantime -- here's some unsolicited advice which just occurred to me...

There have been a few times when there have been tied scores between the two best researchers for a particular study.  Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

So -- that's my concise answer. :-)

Stef
 
Title: Re: This may seem like a familiar place.
Post by: demografx on February 14, 2013, 10:23:08 PM
Dear Stef,

Thank you for your Perpetual Illumination!

Appreciative-demo
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 15, 2013, 08:11:07 PM
Thanks for your reply to my questions, Stef, and for giving us a heads up about the possibility of a tie between award recipients.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 16, 2013, 12:02:10 AM

[To study POIS]... I think gynecology can be ruled out. :-)


 ;D ;D ;D
Title: Re: This may seem like a familiar place.
Post by: demografx on February 16, 2013, 11:43:48 AM
LAPOISSE, thank you for responsibly pointing out our need to save time and money!

I've been forum-involved since 2007 and I think we have some good 6 years of data for NORD's selected researchers -- from hundreds of sufferers, searchable - and organized to some degree, such as B_Jim's fascinating compilation of 400+ POIS cases. This should help get more mileage for our $$. So your suggestions and spirit are on the right track. Thanks.

Our resources - which we'll share with NORD's selected researchers - are found at our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

Title: Re: This may seem like a familiar place.
Post by: demografx on February 17, 2013, 12:10:44 AM

Thank you, Guthrie!! $500 in donation$ today!!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 17, 2013, 12:12:51 AM

Thank you, Anonymous Donor!! $300 in donation$ today!!
Title: Re: This may seem like a familiar place.
Post by: Vincent M on February 18, 2013, 01:01:56 PM
I wonder what sort of study we would want. I was thinking perhaps a brain scan of some sort of a group of POIS sufferers while they're in their worst stage of POIS similar to the PET/CT scan that found physical evidence for chemo brain. If we could prove beyond a reasonable doubt that our bodies undergo some physiological change during POIS it would be a great step forward into being more recognized by the medical community.

I'll have to read over the waldinger papers again since I don't remember how many subjects tested positive for semen allergy. If a decent number did then I suppose a repeat with a control group would be good.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 18, 2013, 10:54:45 PM
(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)(http://catalyst.phrma.org/assets/NORD-Logo.png)


                                               http://rarediseases.org/


POIScenter's Research Fund thermometer (above left):
Awaiting end of February for final tally of Promo
Final values must be confirmed. It won't hurt to go over as Stef writes below:

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I
don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

Stef
 
Title: Re: This may seem like a familiar place.
Post by: Suppertime on February 18, 2013, 11:23:38 PM
Thank you everyone who donated!

If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!
Title: Re: This may seem like a familiar place.
Post by: demografx on February 18, 2013, 11:25:21 PM
We also thank you, Suppertime for your forum contributions :)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 18, 2013, 11:49:20 PM
(http://i858.photobucket.com/albums/ab143/demografx/4A190F7C-FBC1-4686-9886-2B45A7CDE796-149-0000001D9D7D7E45.jpg)
http://rarediseaseday.us/


Title: Re: This may seem like a familiar place.
Post by: demografx on February 19, 2013, 09:51:09 PM
Thank you everyone who donated!

If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!

I empathize greatly. I waited 30 long years for relief, starting with FORUM access (2007). A miracle of sorts.
Title: Re: This may seem like a familiar place.
Post by: Daveman on February 20, 2013, 08:06:37 AM
Everybody.

I am really sorry about having to have curtailed theoretical discussions and trial relating to POIS cause/remedy, but it really WAS effecting donations.
This was amply demonstrated in how quickly donations increased and continued until we made it to our minimum (AND BEYOND!).

So first I can't express my gratitude and happiness for the acheivement we have made.It is VERY RARE for a forum where nobody has even seen each other face to face, to be able to unite together and put tegether more than $33,000.

Second, given that the big pressure is off, I would like to invite (if you are so willing) moe continued conversation as to theories and ideas. At this point we will be having many researchers checking us out, and we don't want to leave any stone unturned.

I have my pet theories, as does everyone else. But I know I can't say that mine is THE theory, and the investigation and backing that we may put into it does not guarantee anything either, without a thourough and highly controlled program with pre-defined goals.

We cannot hope to implement the level of professionalism that is needed, none of us. But that said. We are a showcase, where ideas and concepts can be displayed for those who have the experience and knowledge to actually do something with it.


We will only ask that we don't use the forum as innocent guinea pigs. We are desparate, and will try anything. Until something goes terribly wrong.

So any tests must go with very strong and specific warnings and should all be accompanied by medical supervision of some type.

Remember, we are being watched by professionals. Let's try to give them something useful, something they would probably do (test) themselves.

Thanks for your cooperation and a job very well done.

BTW. I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.

Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 20, 2013, 08:20:30 AM
Major Congratulations to everyone again!
Title: Re: This may seem like a familiar place.
Post by: Vandemolen on February 20, 2013, 08:30:13 AM
I want to thank everybody who made this happen!

But this is still the beginning. We reached the minimum amount for the fund. Research is very expensive. So the guys who pledged money, but didn't give the money yet: please do.
Title: Re: This may seem like a familiar place.
Post by: demografx on February 20, 2013, 11:45:19 PM

I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.

Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.


(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)
Title: Re: This may seem like a familiar place.
Post by: demografx on February 21, 2013, 11:16:08 AM

Research is very expensive.


Yes it is. This is why we are very fortunate to initiate a  "seed grant" -- paid for by POIScenter members.

But this first grant will hopefully attract even MORE funding (next time not $$ from us, but from Government and Industry!), once we have our first POIS research done that is conducted with state of the art controls, systematic theoretical testing and experiments, and top scientific medical research investigators.
Title: Re: This may seem like a familiar place./Video for Rare Disease Day
Post by: Stef on February 21, 2013, 11:57:28 AM
Hi Everyone!

Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).

Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008.  That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).

We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.

In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.

Rare Disease Day is a MAJOR awareness-raising event that takes place around the world.  Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:

EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us

***EURORDIS recently made a RDD video that I thought you might like to see.  It's unique -- unusual -- not what I expected.  I think it's a terrific video, and is only ~ three minutes long.  I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.

Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.

I hope that it touches you.

Stef
Title: Re: This may seem like a familiar place.
Post by: mellivora on February 21, 2013, 05:33:10 PM
Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year :)

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..
Title: Re: This may seem like a familiar place.
Post by: demografx on February 21, 2013, 07:21:07 PM

Here's to us, to NORD and to medics who want to help us.

(http://3.bp.blogspot.com/_871SdrUIr8Q/TNdYmpO482I/AAAAAAAABRI/XNOQKBqvkZQ/s1600/champagne%2Bpopping.jpg)

As B_Jim writes: "not to be confused with orgasm"
(we don't want to be responsible for any POIS as a result of viewing this post :) ).




Title: Re: This may seem like a familiar place.
Post by: Stef on February 21, 2013, 10:23:55 PM
Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year :)

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..

Mel,

How beautifully you write!!!

In the US a popular slogan is, "It takes a village."  

In the world of POIS -- it took a forum of men -- who often could barely eke out a living due to the disability that POIS inflicts -- to trust the process and make donations when they were able.

From my outsider perspective, one of the most amazing things to observe was the support and encouragement here.  If you men only knew how truly AMAZING that is!!!!!!

I keep thinking of Demo -- how he struggled for probably more than 50 years before realizing why he was struggling so terribly -- that it was not a personal character defect!  I guess we'll never know how he made it through.  (Even Demo says he doesn't know how he did it!)  

And then he had the fortitude to tough it out -- brave the push-back -- and forge ahead.

You have all passed an incredible milestone -- and you will not be disappointed.  I am certain of this!!  

There is nothing except solid, scientific research into this miserable, rotten, son-of-a-gun condition.

And just think of the countless others whose lives you will have vastly improved -- or even saved!

Stef



Title: Re: This may seem like a familiar place.
Post by: demografx on February 21, 2013, 11:28:29 PM
Stef, I don't know how we can thank you enough!
Demo
Title: Re: This may seem like a familiar place.
Post by: demografx on February 26, 2013, 12:01:47 AM
Hi Everyone!

Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).

Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008.  That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).

We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.

In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.

Rare Disease Day is a MAJOR awareness-raising event that takes place around the world.  Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:

EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us

***EURORDIS recently made a RDD video that I thought you might like to see.  It's unique -- unusual -- not what I expected.  I think it's a terrific video, and is only ~ three minutes long.  I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.

Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.

I hope that it touches you.

Stef

(http://i858.photobucket.com/albums/ab143/demografx/4A190F7C-FBC1-4686-9886-2B45A7CDE796-149-0000001D9D7D7E45.jpg)
http://rarediseaseday.us/
Title: Re: This may seem like a familiar place.
Post by: PBO on February 27, 2013, 01:18:47 PM

Hi Everyone,

I can't stress this enough.  NORD's MAC will be your absolute best advocates.  Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.

The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period.  Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential.  The award recipient will be determined by our MAC in mid-late November, 2013.  It's a long process -- but there is NO OTHER WAY TO DO IT.  

In the meantime -- here's some unsolicited advice which just occurred to me...

There have been a few times when there have been tied scores between the two best researchers for a particular study.  Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

So -- that's my concise answer. :-)

Stef
 

Just to make sure I've understand it correctly, after mid-March (March 22nd) we won?t be able to give more money to our research grand although the research isn?t expected to start before mid-November?

I suppose the answer Is that we won?t (because the researcher has to know in advance the funds he/she is going to have available). But I just wanted to confirm it.

Thanks,
PBO.

Title: Re: This may seem like a familiar place.
Post by: PBO on March 05, 2013, 04:41:25 AM

PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"


Fully understood Demo.

Thanks for your reply,

PBO.

Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on March 05, 2013, 01:07:43 PM
Its kinda quiet in here since we reach the goal ;

I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )
Title: Re: This may seem like a familiar place.
Post by: demografx on March 05, 2013, 02:45:49 PM
(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)

In February,  $2,542.90 was raised.
 
That gives us $33,677.00 since the balance of Feb 13 ($31,937.00) plus $1,240.00 (amijgoro) plus another $800.00 came in, to which Amij does not contribute.


For......... a grand total of....................... $33,677.00 + $800.00       =      $34,477.00 (we benefit by going over the $minimum)

(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
Title: Re: This may seem like a familiar place.
Post by: demografx on March 05, 2013, 09:54:26 PM
Its kinda quiet in here since we reach the goal ;

I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )

 ;D ;D ;D
Title: Re: This may seem like a familiar place.
Post by: demografx on March 05, 2013, 10:07:26 PM

I think we have made an incredible progress these last years: We are very near from our research objective, more and more people are joining our forum and discovering that they have POIS and that they are not alone, our experiences and the methods we tried are helping more and more people enormously, and we are even making amazing hypothesis about our problem that are sounding real and very possible. We are advancing so fast that I really believe that there is a shiny light at the end of the tunnel. Our problem will be solved very soon and this will happen because of us and our effort, and despite all the struggles we have to suffer. This is simply amazing.



Beautifully said, Observer! :)

Title: Re: This may seem like a familiar place.
Post by: Observer on March 08, 2013, 07:43:48 PM

Beautifully said, Observer! :)



As I said there are more and more reasons to be optimistic about the future. More research -> More publicity -> More people realizing they have POIS -> More research in the medical community, this can only get better
Title: Re: This may seem like a familiar place.
Post by: demografx on March 11, 2013, 04:17:03 PM
What's next for us?

(http://www.drugabuse.gov/list/2009/issue009images/research_animation.gif)

Finally!

Title: Re: This may seem like a familiar place.
Post by: demografx on March 11, 2013, 05:52:32 PM

PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"


Fully understood Demo.

Thanks for your reply,

PBO.



You're correct, demo -- March 22nd is the cut-off date for all RFP donations for 2013.

NORD must have the full amount of a grant before we can post it as a RFP. We'll probably post the 2013 RFPs during the week of March 25th.  The latest they'd be posted is the first week in April -- and that would only happen because our IT staff is is a bit short-staffed right now (NORD's IT manager has been on sick leave because of his own rare disorder!).

If the group can raise a little more than the minimum  (which it already has done!) -- it's always for the best -- for the sake of the research. That money will all go to the researcher (aside from the NORD administrative fee of $3,500 -- which doesn't change, regardless of the amount of the grant). That administrative fee covers numerous expenses (mailings, countless long-distance phone calls and behind-the-scenes EXTRA HOURS of staff time) -- in truth, we often don't break even.  

(I just spoke by phone last week with a researcher in Italy  -- I had to call her to clarify something in her interim progress report -- an email would not have worked in this case. It took a few separate phone calls until I was able to finally reach her! That's just one example of one type of expense -- we don't have a special phone plan for long distance phone calls. )

The NORD program for research grants is absolutely not a profit-making program for NORD -- it never was, and probably never will be. It's purpose is to support scientific research for rare disorders, for which funding does not exist elsewhere. POIS fits that description more than any rare disorder that I'm aware of!!

As I've posted before on the forum, just getting to where the POIS forum's fund has gotten to at this point is TOTALLY AMAZING!!!

The forum members should know that based on the minimum amount of $33,500 -- 90 cents of every dollar will go directly to the research.

You men have done magnificently!!!!!

If you feel it would be helpful, please feel free to post this message on the forum, Demo.

Stef


Title: Re: This may seem like a familiar place.
Post by: demografx on March 15, 2013, 07:16:58 AM
(http://www.drugabuse.gov/list/2009/issue009images/research_animation.gif)


THERE IS NOW OFFICIALLY $34,500.90 IN OUR NORD-POIS MEDICAL RESEARCH GRANT FUND!!



Title: Re: This may seem like a familiar place.
Post by: fidalgo on March 15, 2013, 10:04:40 AM
Demografx, now the donations is over? If I donate more money it won't go  to this survey? I'm asking that because I was donating monthly and, if we can't donate more, I have too cancelate my next donations...
Title: Re: This may seem like a familiar place.
Post by: demografx on March 15, 2013, 12:51:35 PM
Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!
Title: Re: This may seem like a familiar place.
Post by: fidalgo on March 15, 2013, 01:14:24 PM
Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

Adn after that?
Title: Re: This may seem like a familiar place.
Post by: demografx on March 15, 2013, 01:42:36 PM
Awaiting Stef's reply, Fidalgo.

Thank you for your patience.

Title: Re: This may seem like a familiar place.
Post by: Vandemolen on March 16, 2013, 09:42:47 PM
I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.
Title: Re: This may seem like a familiar place.
Post by: demografx on March 17, 2013, 01:45:29 AM

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?


Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"


Title: Re: This may seem like a familiar place.
Post by: demografx on March 17, 2013, 01:46:13 AM



I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )


(http://i797.photobucket.com/albums/yy260/caseyjex/Desert-Island.gif)

OK BUT NOT THIS ONE!
 ;D



Title: Re: This may seem like a familiar place.
Post by: demografx on March 17, 2013, 01:47:54 AM




Here's to us, to NORD and to medics who want to help us.

(http://3.bp.blogspot.com/_871SdrUIr8Q/TNdYmpO482I/AAAAAAAABRI/XNOQKBqvkZQ/s1600/champagne%2Bpopping.jpg)

Thank you, guys, for being incredible teammates!



Title: Re: This may seem like a familiar place.
Post by: lauracostis on March 17, 2013, 02:47:40 AM

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?


Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"



We are going to need another research grant some time in the near future, one probably wont be enough
Title: Re: This may seem like a familiar place.
Post by: Daveman on March 17, 2013, 07:49:22 AM

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?


Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"



We are going to need another research grant some time in the near future, one probably wont be enough

Yes, and I don't think that's such a bad thing.

This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.

Much more ammunition for us to take into the doctor's office.

Title: Re: This may seem like a familiar place.
Post by: Stef on March 17, 2013, 12:34:26 PM
I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.

Hi VM (and Everyone!)

Van -- I'm sorry to hear about this sleep apnea that you're experiencing.  It's so true -- sleep apnea causes interrupted sleep -->fatigue and irritability would be natural consequences.

Also, despite the current lack of basic knowledge about POIS -- which affects people in different (and also similar) ways -- it sort of makes sense to me that POIS could worsen sinusitis.  There seems to be such an inflammatory reaction, or maybe it's an allergic one -- or a combination of both (not known yet!) --and  that if one is prone to sinusitis -- POIS would worsen it.

We're all wishing you the best with the tonsillectomy!!!!  I think you'll feel pretty sore and miserable the first week due to the surgery -- but will then start to feel much better.  Please let us know when you're going to have it done. If you've already had it done, let us know how you're doing when you feel up to it.

Most of all -- I hope it helps with the sleep apnea!!  

POIS or no POIS -- sleep apnea is a serious condition on its own, and affects general health. But fortunately it's common and can be treated.

Stef
Title: Re: This may seem like a familiar place.
Post by: Vandemolen on March 17, 2013, 06:28:51 PM
Thankyou Stef. I will. But al lot of people have sleep apnea but they don't know they have it. And it takes a long time before a doctor gives the diagnosis sleep apnea.
Title: Re: This may seem like a familiar place.
Post by: idrink211 on March 20, 2013, 08:25:14 AM
Hello all, new member here.  So I just learned this syndrome this morning after make a post on Reddit that described my symptoms.  I'm rather relieved to learn that I'm not alone.  Here is the text of the post I made yesterday on Reddit for all of you to see:

Quote
I was hoping someone could help me understand what's going on chemically in my body that affects me so much after an orgasm.  These phenomena didn't happen when I was younger, but for the past few years it's been driving me nuts.

Whenever I have an orgasm the following things plague me for about 24 hours:

  • A huge drop in motivation. I'll literally won't want to do anything and just want to feel normal again.  I want to stay away from people.  I don't want to talk or think.
  • Trouble falling to sleep.  This might be the worst of it all.  I'll feel extremely restless.  Having an orgasm right before falling asleep is the worst.  I'm either not able to sleep or I'll have sleep starts (hypnic jerks) that wake me up in a terrifying manner.  Speaking of terrifying, my dreams are other worldly and disturbing, and when I wake up in the morning I don't feel well rested.
  • Clumsiness. In addition to my lack of motivation, my coordination becomes very off.  I knock things over.  I find it more difficult to plan the sequence of physical things, like making cereal for breakfast.  You know, get the bowl, pour in milk, put milk away.  Which hand do I carry what in?  I don't know!
  • Panic attacks. This kind of goes hand in hand with the inability to sleep.  I'll feel my heart beating hard in my chest.  I have to keep moving.  I feel cold and detached from my body.

Within an hour after an orgasm they're at their worst and slowly wear off after 24 hours.  Then I'm my normal self again... confident, focused, witty and relaxed with pretty much none of the problems above.

It's gotten to the point where I only want to have sex with my wife or masturbate on the weekend because I don't want to feel like this at work.

Just this past Sunday my wife and I had really good sex before bed.  We cleaned up and passed out quickly.  Then I had this sleep start that shook the bed.  My wife asked if I was OK.  Our one year old had trouble sleeping through a lot of the night.  So I ended up getting only a few hours sleep and they were not good ones (bad dreams).  The following day (yesterday) I was a wreck at work.  A lack of sleep makes these symptoms even worse.

Like I said, this didn't happen in my teens and twenties, which happened to be a time when I masturbated a lot and had sex whenever I could.  In my 30s though, I've had to cut back because it really fucks me up.

Can anyone shed some light?

TL;DR - After having an orgasm I feel unmotivated, clumsy, nervous and have trouble sleeping for about a day.  WTF is going on with my body?

After learning that this is an actual syndrome I'm totally abstaining from sex and masturbation until further notice.  I've never had a true nocturnal emission in my life because I've always masturbated regularly.  So I'm not sure if I should be worried about that.  I am worried about how my wife will react to this though.

I'm amazed that some of you deal with these symptoms for multiple days.  For me, I'm the worst for about 24 hours and then pretty much normal but not 100%.  After two full days I'm cured for sure.

Well, nice to meet you all.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on March 20, 2013, 09:34:28 AM
It's a pleasure to have you with us, idrink211.

The things that I've found to help my cognitive problems during POIS the most are fenugreek+tea/garlic, huperzine, and ginkgo biloba. Niacin seems to have been effective for more of us though(flush required).
Title: Re: This may seem like a familiar place.
Post by: demografx on March 20, 2013, 02:53:39 PM
Welcome, idrink211! :) Please see our Welcome Post for resources for you:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Title: Re: This may seem like a familiar place.
Post by: demografx on March 20, 2013, 03:42:13 PM

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?


Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"



We are going to need another research grant some time in the near future, one probably wont be enough

Yes, and I don't think that's such a bad thing.

This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.

Much more ammunition for us to take into the doctor's office.



Yes. And so far, we have accomplished the HARDest part:

Getting the very FIRST Grant!!

Title: Re: This may seem like a familiar place.
Post by: demografx on March 21, 2013, 11:28:46 PM

Just donated $250...Plan to do it again.


Thank you, bjameshill!
Title: Re: This may seem like a familiar place.
Post by: Clycos on March 25, 2013, 04:39:49 PM
Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.

Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on March 26, 2013, 05:30:09 AM
There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.
Title: Re: This may seem like a familiar place.
Post by: Daveman on March 26, 2013, 06:58:35 AM
There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.

Especially as the research activity starts to develop.

I'm sure that our forum would have to be one of the principal places researchers go to find information that would be difficult to get other places. Of course it is not controlled information, but it is very good referential information.

And at the same time, new members just finding out about POIS for the first time, may find benefit and can start connecting to a real direction.



Title: Re: This may seem like a familiar place.
Post by: Daveman on March 26, 2013, 07:03:06 AM
Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.



Here is the link for donating!

http://poiscenter.com/forums/index.php?topic=173.msg1750#msg1750

And we are on the NORD Database I'll have to find you the link....
Title: Re: This may seem like a familiar place.
Post by: demografx on March 27, 2013, 01:09:16 AM

[Clycos], we are on the NORD Database I'll have to find you the link....


http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail
Title: Re: This may seem like a familiar place.
Post by: demografx on March 28, 2013, 10:30:27 PM

Attention iPhone users:

To get your RSS feed of POIScenter.com on your iphone, copy and paste this link into Safari - your Web browser:

Or just click now and bookmark it.

http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
Title: Re: This may seem like a familiar place.
Post by: demografx on April 02, 2013, 01:21:21 AM
Hello, Everyone!

First, my apologies to you for not being able to provide an update about your research grant until today. NORD has been going through its annual financial audit for the past two weeks, so it's been very difficult to sort out all of our research grant funds in a more timely manner.  

But we did it -- and you men have done splendidly!!! You have officially surpassed the minimum amount to offer for a grant!  

In total, you've raised $34,850.  NORD's administrative fee is $3,500. This leaves you with a $31,350 grant award to offer.   This translates to 90 cents of every dollar going directly to your research.

Your POIS grant will be posted online some time next week (the week of April 1st).  I'll provide the link to it (to the "RFP") in [the NORD Research Grant thread/section of your forum ASAP.]

You really, truly did a wonderful job.

Congratulations!!!  

Stef




Title: Re: This may seem like a familiar place.
Post by: sameer7777 on April 03, 2013, 11:07:21 AM
Thankyou stef !!! And demo !!!
Title: Re: This may seem like a familiar place.
Post by: demografx on April 04, 2013, 01:24:30 AM
Thank you stef !!! And demo !!!

And Daveman !!!

And everyone else who supported the NORD notion for POIS !!!
Title: Re: This may seem like a familiar place.
Post by: demografx on April 04, 2013, 01:28:49 AM
Attention all POISers: POIS GRANT NEWS!
Please visit Stef's new thread,
"POIS RFP, 2013"
http://poiscenter.com/forums/index.php?topic=1012.0
Title: Re: This may seem like a familiar place.
Post by: demografx on April 10, 2013, 11:46:09 AM
Stef ("nordnurse") informs us "Thousands -- literally -- receive "NORD" google alerts. :-)  "

TODAY!


---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Wed, Apr 10, 2013 at 12:37 AM
Subject: Google Alert - post orgasmic illness syndrome
To: demografx


Web   1 new result for post orgasmic illness syndrome
 
POIS - National Organization for Rare Disorders
Announces. Research Seed Grant Funding for one, one-year grant ($31,000) for. Post-Orgasmic Illness Syndrome (POIS). Submission Deadline: May15, 2013 ...
www.rarediseases.org/docs/research-grants/POIS.doc
Title: Re: This may seem like a familiar place.
Post by: demografx on April 13, 2013, 05:43:02 PM


I would assume doctors know how to objectively test neurochemical imbalances in the human brain by now.


Fascinating new developments in analyzing the human brain. Here's one in today's news:
http://touch.latimes.com/#section/-1/article/p2p-75334338/
Title: Re: This may seem like a familiar place.
Post by: nenexx on April 16, 2013, 07:57:27 AM
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Title: Re: This may seem like a familiar place.
Post by: demografx on April 16, 2013, 12:58:54 PM
RFP NEWS :)
 
--------------------------------------------------------------------------------------------


---------- Forwarded message ----------
From:  Health Consultantcy
Date: Tue, Apr 16, 2013 at 10:37 AM
Subject: Fw: Today's RFPs from Philanthropy News Digest
To: Stefanie Putkowski


Stef,
 
First, glad that you are safe and sound.
 
Just received this update from the Foundation Center about the POIS Restricted Research Grant; what a good avenue of public awareness!  Hope that you receive many responses to this RFP.
 
Best wishes,
 
Consultant
 

----- Forwarded Message -----
From: PND RFP Alerts <PND_RFP@foundationcenter.org>
To:  Consultant
Sent: Tuesday, April 16, 2013 6:33 AM
Subject: Today's RFPs from Philanthropy News Digest
 
April 16, 2013

The following requests for proposals have been posted to Philanthropy News Digest:


National Organization for Rare Disorders Invites Proposals for Post-Orgasmic Illness Research Projects
A grant of of up to $31,000 will be awarded to initiate or advance research and understanding of POIS, the results of which could be used to obtain funding from other sources....
Deadline: May 15, 2013
Posted: April 16, 2013


You received this e-mail because you subscribed to PND RFP Alerts with the username "jfrc914." To change the subjects of your alerts or to unsubscribe, click here.

Foundation Center • 79 Fifth Avenue, New York, NY 10003 • (212) 620-4230
Title: Re: This may seem like a familiar place.
Post by: demografx on April 16, 2013, 01:10:41 PM

I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.


Welcome, nenexx! Please visit our Welcome Page, many resources for you:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Title: Re: This may seem like a familiar place.
Post by: nenexx on April 17, 2013, 10:30:15 AM
Have read almost the whole thread now. Is there anything I can do to help except completing the survey to that spannish doctor?

EDIT: One more question, is it any of you that started the facebook page about this? I saw this on there:
Post Orgasmic Illness Syndrome (POIS)
den 31 mars
After some research there is a strong possiblity that Low Igm and Igg levels can be the key to POIS. Please go to an ifectious disease doc and ask for a full immune panel and get back to us, even if the doc says your numbers are "normal" Share with us your numbers, do not wait.
Title: Re: This may seem like a familiar place.
Post by: demografx on April 19, 2013, 02:16:46 PM
just a reminder...

Attention all POISers: POIS GRANT NEWS!
Please visit Stef's new thread,
"POIS RFP, 2013"
http://poiscenter.com/forums/index.php?topic=1012.0
Title: Re: This may seem like a familiar place.
Post by: demografx on April 19, 2013, 09:44:31 PM
We did it! $31,000 POIS Grant!

(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)

Pass it on! Show the world!
http://tinyurl.com/bwhbn5k


Title: Re: This may seem like a familiar place.
Post by: nenexx on April 22, 2013, 11:32:35 AM
I want to write about this on the biggest forum in Sweden. I want to help raise awareness and maybe some people recognize thereselves in the issue. Since I'm not the best writer myself I would very much like a mould(don't know if this is the correct word) so I do this in the best way possible. Any suggestions? Maybe I could use the reddit thread and change a few things that's personal for him? Also, is this anything you've been talking about, suggesting to people that they make a post on big forums in their countrys to make more people aware of this?
Title: Re: This may seem like a familiar place.
Post by: demografx on April 22, 2013, 03:24:39 PM
Excellent ideas and suggestions, nenexx! :)

We have had great success (with many thanx to "Observer") in exposing the wider population of Spain to the existence of POIS via their national newspaper, El Mundo:
www.poiscenter.com

Australia: via ABC Documentary TV Program (see Mat780's POISChannel on YouTube)
www.youtube.com/POISchannel
Title: Re: This may seem like a familiar place.
Post by: demografx on April 22, 2013, 07:41:01 PM




-----Original Message-----
From: Google Alerts <googlealerts-noreply@google.com>
To: POIScenter.com
Sent: Mon, Apr 22, 2013 5:33 pm
Subject: Google Alert - Postorgasmic Illness Syndrome





Web 1 new result for Postorgasmic Illness Syndrome
 
 
Postorgasmic illness syndrome | Disease | Overview | Office of ...Please contact us with your questions about Postorgasmic illness syndrome We will answer your question and update these pages with new resources and ...
http://rarediseases.info.nih.gov/gard/10809/postorgasmic-illness-syndrome/resources/1

--------------------------------------------------------------------------------
Title: Re: This may seem like a familiar place.
Post by: Daveman on April 23, 2013, 06:35:01 AM
I want to write about this on the biggest forum in Sweden. I want to help raise awareness and maybe some people recognize thereselves in the issue. Since I'm not the best writer myself I would very much like a mould(don't know if this is the correct word) so I do this in the best way possible. Any suggestions? Maybe I could use the reddit thread and change a few things that's personal for him? Also, is this anything you've been talking about, suggesting to people that they make a post on big forums in their countrys to make more people aware of this?

Hi nennex.

You can find good information here at the following address. It was created to recompile a basic introduction to POIS for those who may be interested.
http://poisenglish.blogspot.com.es/

You may take pieces of it for you "model", or even put the link into anything you wish to write.

This link has references to all our pertinent POIS resources, including this forum and the google "compendium" by Matt et al.

Thanks for spreading the word.

Title: Re: This may seem like a familiar place.
Post by: demografx on April 23, 2013, 07:51:52 AM
From respectable Duke University

---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Sun, Apr 21, 2013 at 1:39 AM
Subject: Google Alert - post orgasmic illness syndrome
To: POIScenter.com


Web   1 new result for post orgasmic illness syndrome
 
Proposals for Post-Orgasmic Illness Research Projects - Funding ...
COM, is accepting applications for a scientific or clinical seed grant dedicated to Post-Orgasmic Illness Syndrome (POIS). POIS has been only recently reported, ...
https://researchfunding.duke.edu/detail.asp?OppID=13771
Title: Re: This may seem like a familiar place.
Post by: demografx on April 23, 2013, 09:42:09 AM

NORD received a donation for the POIS research grant a few days ago.  The donor sent an inspiring message along with the donation, and has given NORD permission to pass that message along to the forum (at Stef's  request) --



"Make good use of the donation and try to find a cure for POIS. It will benefit many people who are silently suffering and it will be a blessing in return."
Title: Re: This may seem like a familiar place.
Post by: demografx on April 24, 2013, 12:20:55 PM
RFP NEWS :)
 
--------------------------------------------------------------------------------------------


---------- Forwarded message ----------
From:  Health Consultantcy
Date: Tue, Apr 16, 2013 at 10:37 AM
Subject: Fw: Today's RFPs from Philanthropy News Digest
To: Stefanie Putkowski

Stef,
 
First, glad that you are safe and sound.
 
Just received this update from the *Foundation Center about the POIS Restricted Research Grant; what a good avenue of public awareness!  Hope that you receive many responses to this RFP.
 
Best wishes,
 
Consultant
 

*PND/Foundation Center • 79 Fifth Avenue, New York, NY 10003 • (212) 620-4230


(http://i858.photobucket.com/albums/ab143/demografx/5F80B109-A22D-43C1-8654-72990913B66E-364-0000003D4D4E4B69.jpg)

(http://i858.photobucket.com/albums/ab143/demografx/FDB67FC6-5C3F-4C90-A9CA-51BE6870303A-364-0000003B08BB5F4F.jpg)

Title: Re: This may seem like a familiar place.
Post by: mat780 on April 24, 2013, 06:09:59 PM
Thanks anonymous donor!!!



NORD received a donation for the POIS research grant a few days ago.  The donor sent an inspiring message along with the donation, and has given NORD permission to pass that message along to the forum (at Stef's  request) --



"Make good use of the donation and try to find a cure for POIS. It will benefit many people who are silently suffering and it will be a blessing in return."
Title: Re: This may seem like a familiar place.
Post by: demografx on April 25, 2013, 12:19:01 AM
AOL VIDEO on POIS
http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680
Title: Re: This may seem like a familiar place.
Post by: Nightingale on April 25, 2013, 08:57:29 AM
Firstly, I'm amazed this made it onto "Drs.", a REALLY popular show here in the US.  Second, I'm amazed at how this "expert" on tv claimed to know what the cause of POIS is when the verdict is very much still out!  I've watched this show before, and seen this kind of broad-brushing before.  They get a problem, and get a solution, then focus camera's on the hired models who sit in the front row to make you react to how pretty they are.

Ugh, Im kind of torn on this one.  I've been in organizations where the idea that "There's no such thing as bad news", but they never caught traction.  Truth and facts are really important, and I'm embarassed to have had that show use our obviously eyebrow-raising illness for material on their show without being sensitive to us, the sufferers.  I am happy though that at the end the main host encouraged those who had this issue to seek help, that's exactly what POIS sufferers need when they don't know they have it.

What do you guys think?  Thanks for the post demo
Title: Re: This may seem like a familiar place.
Post by: demografx on April 26, 2013, 08:35:35 AM
Welcome, Nightingale ! :)
Title: Re: This may seem like a familiar place.
Post by: Daveman on April 28, 2013, 08:38:18 AM
Important announcement.

Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.

Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.

Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.


Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.

Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.

Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.

I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.



Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on April 28, 2013, 09:31:02 AM
this great news. can i post it on the other forum.
Title: Re: This may seem like a familiar place.
Post by: Starsky on April 28, 2013, 11:19:54 AM
Daveman, but do you know in which direction is this doctor going, autoimmune, hormonal or some else?
Title: Re: This may seem like a familiar place.
Post by: mellivora on April 29, 2013, 05:15:55 AM
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.

Hi nenexx

I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.

I started a poll for this here:

http://poiscenter.com/forums/index.php?topic=286.0
Title: Re: This may seem like a familiar place.
Post by: Chris on April 29, 2013, 07:55:41 AM
Important announcement.

Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.

Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.

Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.


Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.

Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.

Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.

I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.





That's very good and hopeful to hear !Any Pois sufferer who lives in SPAIN or better in Madrid,should go..Its very nice to have this doctor doing this for us and we must not lose this good oppurtunity!If i am not mistaken we have a lot of members who live in Spain..This totally worth it.
Title: Re: This may seem like a familiar place.
Post by: nenexx on April 29, 2013, 09:09:56 AM
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.

Hi nenexx

I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.

I started a poll for this here:

http://poiscenter.com/forums/index.php?topic=286.0


Thanks for answering. I get like shivers and shit which stops when I've gone like 1 or 2 weeks without orgasm(don't know for sure howlong) Great to get it confirmed that others have the same (great and great...).
Title: Re: This may seem like a familiar place.
Post by: edhawk10 on April 29, 2013, 10:06:33 AM
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.

Hi nenexx

I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.

I started a poll for this here:

http://poiscenter.com/forums/index.php?topic=286.0


Thanks for answering. I get like shivers and shit which stops when I've gone like 1 or 2 weeks without orgasm(don't know for sure howlong) Great to get it confirmed that others have the same (great and great...).

Hey guys.

Same happens to me. It was roughly 20 degrees(celsius) the other day and i was so cold that i needed a blanket. Usually takes me 4-5 days to slowly get back to normal.

Do any of you get canker sores? Anything related to POIS? I heard it could be stress but for me foods are definite trigger as well(mostly hot and acidic) and sometimes after O i notice it so not sure if there's anything to that.

Also wanted to say that you guys are doing great work on here. This place has so much helpful info so thanks for making it easier on us.

I'm in Canada(Ottawa).


Title: Re: This may seem like a familiar place.
Post by: demografx on April 29, 2013, 11:56:14 AM
this great news. can i post it on the other forum.


Sure! :)
Title: Re: This may seem like a familiar place.
Post by: Prancer on April 29, 2013, 06:18:33 PM
Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Hi nenexx, yes I am also much more sensitive to the cold after an orgasm. (I always imagined that if I ever somehow fell into icy water with pois I'd 'prolly die so much sooner).
Title: Re: This may seem like a familiar place.
Post by: edhawk10 on April 30, 2013, 03:12:09 PM
Something Daveman mentioned about warm days being better..Definitely agree but this winter was fairly good(mostly mild POIS) for me. Had O at least once, sometimes twice a week. Winter before this one, it was horrible so i know the difference is pretty big. I kept my self busy for most part(cooking foods i like, sports, watching movies) and made sure that i ate well and get plenty of rest. Now that summer is coming i should be feeling even better but my sleep is somehow worse and i am getting a lot of tension in neck/shoulder area. This is causing me significant brain fog(in fact during winter i rarely had it). It's been like that for about a week so i ordered some Jamieson Relax and Sleep(with valerian and other herbs) and hoping this will get my sleep back(it says relief of nervous anxiety, muscle relaxant, restful sleep). Anyone try these? There don't seem to be any serious side effects so i'll give it a try and let you guys know.

Title: Re: This may seem like a familiar place.
Post by: demografx on May 02, 2013, 12:46:56 AM
Important announcement.

Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.

Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.

Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.


Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.

Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.

Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.

I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.





"When it rains, it pours" [with opportunities!]...Thank you, Daveman!
Title: Re: This may seem like a familiar place.
Post by: Stef on May 02, 2013, 05:07:15 PM
Firstly, I'm amazed this made it onto "Drs.", a REALLY popular show here in the US.  Second, I'm amazed at how this "expert" on tv claimed to know what the cause of POIS is when the verdict is very much still out!  I've watched this show before, and seen this kind of broad-brushing before.  They get a problem, and get a solution, then focus camera's on the hired models who sit in the front row to make you react to how pretty they are.

Ugh, Im kind of torn on this one.  I've been in organizations where the idea that "There's no such thing as bad news", but they never caught traction.  Truth and facts are really important, and I'm embarassed to have had that show use our obviously eyebrow-raising illness for material on their show without being sensitive to us, the sufferers.  I am happy though that at the end the main host encouraged those who had this issue to seek help, that's exactly what POIS sufferers need when they don't know they have it.

What do you guys think?  Thanks for the post demo

Nightingale,

Sorry for this belated reply to your post. I know you were asking the "guys" -- but I had to chime in!

I think that your post is spot-on, 100% correct-- I could not agree with you more about everything you wrote.

"The Doctors" did a much more brief segment on POIS several months earlier. (I learned about it through a POIS google alert.) I watched the clip from that earlier segment. To my utter disbelief -- they actually ended up joking about POIS!  I was so disturbed about it that I posted something directly onto their website, mentioning the stigma of POIS, the isolation that people with all rare diseases experience, NORD, blah, blah-- I did not mince words.  (Never got a reply, and did not expect to.)

This more recent segment was a vast improvement. That "expert" they had on is a urologist -- I think from Beverly Hills -- with no obvious experience with POIS -- no publications, nothing on his own website about POIS, etc.

As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.

Stef
Title: Re: This may seem like a familiar place.
Post by: demografx on May 06, 2013, 09:28:59 PM

As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.


We have certainly been turned into a joke before. Here's one example:
http://www.thespoof.com/news/science-technology/80082/who-declares-postorgasmic-illness-syndrome-1-threat-against-humanity-boner-wise
Title: Re: This may seem like a familiar place.
Post by: Stef on May 07, 2013, 06:42:14 AM

As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.


We have certainly been turned into a joke before. Here's one example:
http://www.thespoof.com/news/science-technology/80082/who-declares-postorgasmic-illness-syndrome-1-threat-against-humanity-boner-wise

Hi, Demografx --

I just read the POIS "spoof" from 2010 that you posted.

It definitely mocked POIS (at first), but somehow then turned into a real plea for scientific investigation -- even encouraging forum members (I think directed to NSF at that time) to "write letters to every public and private sexual health researcher, relentlessly, until someone publicly decides to champion their cause."

I agree with that!

Stef






Title: Re: This may seem like a familiar place.
Post by: nenexx on May 07, 2013, 09:56:01 AM
I'm just gonna put it out there. I love Niacin. Wish I would have get to know about it a looooooooong time ago. Thanks to whoever discovered this method, makes my life much easier to live.
Title: Re: This may seem like a familiar place.
Post by: demografx on May 08, 2013, 03:38:50 PM
May, 2013 e-newsletter from NORD:
http://tinyurl.com/cwozpb5


In this issue, NORD Announces Funding for Seven New Research Grants, including POIS !


Title: Re: This may seem like a familiar place.
Post by: Bulbo on May 12, 2013, 10:33:01 AM
please can anyone tell me how to cure the mental fog that occurs after arousal
Title: Re: This may seem like a familiar place.
Post by: Vincent M on May 14, 2013, 10:55:38 AM
please can anyone tell me how to cure the mental fog that occurs after arousal

fenugreek + green tea improves my cognition during POIS. As does saw palmetto, huperzine, and ginkgo. More details can be found in my treatment summary linked to underneath this comment.
Title: Re: This may seem like a familiar place.
Post by: Bulbo on May 16, 2013, 06:02:40 AM
please can anyone tell me how to cure the mental fog that occurs after arousal

fenugreek + green tea improves my cognition during POIS. As does saw palmetto, huperzine, and ginkgo. More details can be found in my treatment summary linked to underneath this comment.
Thanks for replying. I am in college. In order to study well , I have to find a way to reduce the mental fog that occurs after arousal. I accidentally found that by eating a multivitamin tablet the mental fog was reduced. One of its ingredients was nicotinamide 100 mg. Since niacin has anti inflammatory actions, I concluded that Nicotinamide 100 mg reduced the mental fog that occured after arousal. So i need nicotinamide tablets. I live in India. Here they don't sell nicotinamide tablets. Can anyone please tell me trustable websites , from where I can buy nicotinamide 100 mg tablets.
Have any one else tried niacinamide 100 mg for mental fog after arousal?
Title: Re: This may seem like a familiar place.
Post by: Vincent M on May 16, 2013, 11:59:19 AM
Bulbo, I did a quick search at the place I usually buy my supplements from and I think I found what you want. Niacinamide and nicotinamide are the same thing. This is the smallest dose I could find it in at that site, but you could open the capsules and only take half that dose if you wanted.

http://www.swansonvitamins.com/swanson-premium-niacinamide-250-mg-250-caps

If Swanson doesn't ship to you then Amazon might. Amazon is another trusted site that I have used a lot in the past:

http://www.amazon.com/Source-Naturals-Niacinamide-100-tablets/dp/B0014H1L42/ref=sr_1_3?ie=UTF8&qid=1368723373&sr=8-3&keywords=niacinamide+100mg
Title: Re: This may seem like a familiar place.
Post by: Bulbo on May 17, 2013, 01:14:44 AM
Bulbo, I did a quick search at the place I usually buy my supplements from and I think I found what you want. Niacinamide and nicotinamide are the same thing. This is the smallest dose I could find it in at that site, but you could open the capsules and only take half that dose if you wanted.

http://www.swansonvitamins.com/swanson-premium-niacinamide-250-mg-250-caps

If Swanson doesn't ship to you then Amazon might. Amazon is another trusted site that I have used a lot in the past:

http://www.amazon.com/Source-Naturals-Niacinamide-100-tablets/dp/B0014H1L42/ref=sr_1_3?ie=UTF8&qid=1368723373&sr=8-3&keywords=niacinamide+100mg
Unfortunately both of the websites wont ship to my place. Anyway thanks for helping.
Title: Re: This may seem like a familiar place.
Post by: demografx on May 17, 2013, 02:16:46 PM
Will The Vitamin Shoppe send to you?
http://m.vitaminshoppe.com/store/en/vitamins_minerals/index.jsp
Title: Re: This may seem like a familiar place.
Post by: Bulbo on May 18, 2013, 01:40:47 AM
Will The Vitamin Shoppe send to you?
http://m.vitaminshoppe.com/store/en/vitamins_minerals/index.jsp
Don't need the website anymore because yesterday I met my physician, he told me that vitamin C is better. I will try vitamin C to check whether it reduces the mental fog that occurs after arousal and I will inform you guys. If it doesn't work then I will have to opt for niacinamide. Are you very sure that taking nicotinic acid after food is not effective?
Title: Re: This may seem like a familiar place.
Post by: demografx on May 18, 2013, 10:22:49 AM
From Stef/"nordnurse" today:


=  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =


"Guys,

You've received some NICE [grant] applications !!!!!  :-)  

(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)

Just thought you'd want to know. :-)

Yes -- you can post --  I can't give out specifics -- can't name names or advise exactly how many applications were received.  But I can tell you  -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!

Later!"

=  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =  =

Yay!!!!!
Demo
Title: Re: This may seem like a familiar place.
Post by: victor.kons on May 28, 2013, 02:24:57 PM
Hi Guys,

I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly.  I was able to complete the business challenge this day just fine.

We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?

Victor
Title: Re: This may seem like a familiar place.
Post by: Daveman on May 28, 2013, 03:01:15 PM
Hi Guys,

I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly.  I was able to complete the business challenge this day just fine.

We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?

Victor

WOW, great discovery... and equally good question.

What if the solultion to POIS was the solution to a common cold? Then we might have a lot more researchers interested in us!!

This time you didn't have to take it "before", as with POIS.

When taken (Niacin) during POIS, and not before, does it help POIS temporarily? I assume it only helped the cold temporarily as well too right?

I know if taken before a night out partying, it prevents the hang-over!
Title: Re: This may seem like a familiar place.
Post by: victor.kons on May 29, 2013, 06:35:15 AM
Hi Guys,

I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly.  I was able to complete the business challenge this day just fine.

We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?

Victor

WOW, great discovery... and equally good question.
Yup, now I know how to have clear head when in cold if needed ;)

What if the solultion to POIS was the solution to a common cold? Then we might have a lot more researchers interested in us!!
Yes, exactly! I was surprised of the efficiency of Niacin to be able to clear cold symptomps so fast, though temporarily, but I think it stopped my cold to develop to strong forms, now I still have it, but in mild form...

This time you didn't have to take it "before", as with POIS.
Yup, thats right!

When taken (Niacin) during POIS, and not before, does it help POIS temporarily? I assume it only helped the cold temporarily as well too right?
When taken Niacin during POIS it doesn't help me temporarily. And with cold it does help temporarily, well I was able to think clearly and take physical load normally till the end of the day! The surprising fact was that Niacin immediately cleared main cold symptoms - physical and mental weakness, though temporarily but definitely strongly. Perhaps POIS is not so mystical phenomen if it has so many similarities with simple cold and the solution to POIS might be simple as well?

I know if taken before a night out partying, it prevents the hang-over!
Yup, I have learned this recommendation from you and use it from time to time to protect myself from hang-over :)

Victor
Title: Re: This may seem like a familiar place.
Post by: demografx on June 04, 2013, 10:05:18 PM
FROM STEF/"nordnurse" Today

--------------------------------------------------------------------------------------------------


"I received an email from a researcher this past Friday -- asking if it was too late to apply for the POIS grant. He'd only just found out about the grant from a colleague, knew the deadline had passed, but was eager to apply.  He wasn't on our researcher list. (Often -- this is exactly what happens. Researchers apply because they hear about the RFP from a colleague -- either they collaborate, or the first one isn't interested but is passing on the information.)

I advised him to send his application -- we'd get it to our MAC.  

I'm not at all surprised at the response that the POIS grant has generated -- I had no doubts. There was never a worry about this (on my part) -- although I know that it probably had been a worry for you and the forum members.

POIS is such a vast unknown right now, and seems to involve multiple organ systems and multiple biological pathways. It's exactly the type of disorder that would interest a broad range of researchers.  I'm betting that there is one, main cause -- leading to the various, miserable symptoms that some with POIS develop and some don't develop.  But there are enough symptoms in common to definitely call it a "syndrome."








Title: Re: This may seem like a familiar place.
Post by: demografx on June 05, 2013, 10:00:56 AM
what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...

Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0

This can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.
Title: Re: This may seem like a familiar place.
Post by: demografx on June 05, 2013, 12:24:58 PM
I can never remember how to do the search thing on the NS website - it never works well if you use the site itself. I think you have a way of doing it via google...could you remind me please? Sorry if it seems like I'm being lazy, I'm sure you've posted it on the NS site many times before. Then again...I'd have to do a search for it to find it!

SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  15,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

Title: Re: This may seem like a familiar place.
Post by: demografx on June 05, 2013, 07:24:03 PM

Hello...

I gave up this [desensitization] treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP


JP, I am very sorry to hear this.
(http://poiscenter.com/forums/index.php?topic=11.msg9536#msg9536)
Interesting comments at above link by STEF/"nordnurse" and other forum members.

Please don't give up, JP: we *****WILL***** find  Y  O  U  R  solution!!!

Title: Re: This may seem like a familiar place.
Post by: demografx on June 06, 2013, 09:26:37 AM
Hello...

I gave up this treatment.

I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,

JP


[Stef's reply to JP below]

Hi JP and Everyone!

First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!!  I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.

You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.

(But that's all I can say -- better quit while I'm ahead!)

Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)

But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly.  (Honestly -- I just do not think you're going to be waiting long.)

Try to keep remembering -- at this moment, no one knows what POIS is!  You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!

Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.

(I know -- I sound like a broken record!)

Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research.  He has a hypothesis that POIS is an allergic condition -- which may or may not be on track.  

(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)

Without funding, there's no research -- and with no research, there are no answers. It's just that simple.

And now you've got the funding for the research.  :)

There has never before been funding for POIS research -- do you all realize this??!!!!  So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!

(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!)  

The question, "What is POIS" -- will likely be answered very soon.

So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.

Please just be safe and careful while finding ways to get yourselves through this misery.

The answers are around the corner!
 
Stef

Title: Re: This may seem like a familiar place.
Post by: demografx on June 06, 2013, 02:05:28 PM

this great news. can i post it on the other forum.


Sure! :)

CertainlyPOIS and others: feel free to post any POIS news anywhere! The more sufferers we reach the better it is for everyone.

Demo
Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 06, 2013, 06:53:41 PM
Hey guys as I said before I'm working on a site to help poisers especially newbie to quickly find remedies and more importantly how to use them.
I'm going quite slow, loads of other stuff to do and many many other. Including pois :)

http://www.helpmypois.info/ (http://www.helpmypois.info/)

The site will be online within a week or two I guess.

Bless

Sounds great. Take your time. I've actually put my work on my summary of the member case symptoms and treatments on hold. I have to focus on other things for a while.  I'll give you the link to what I've done so far in case anyone is curious or wants to continue where I left off:

https://sites.google.com/site/poiscompilationsbyvm/

So far I'm just getting links to each member on nsf(since it's difficult to search for a specific member's profile/posts there) while adding at least a few of their symptoms or treatments. I've also added some members' quotes from poiscenter. Ultimately I want to have each member's symptoms and primary treatments listed all on one page so a simple ctrl+f search will enable you to find that data for any member you want. I have it on a separate site for now because if I tried to put it on poiscenter it'd be too large for one post, which would make it difficult to edit.

The other reason I'm doing this is that when I did the member experience compilations with fenugreek, b complex, and saw palmetto I realized the advanced google search is time consuming to use since it gives you a lot of links you don't need and on top of that it misses some data. For instance when I tried an advanced google search of poiscenter for "fenugreek" it completely missed a post by Prancer saying that fenugreek helped him even though he typed "fenugreek" in the post.


Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 06, 2013, 08:21:36 PM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 06, 2013, 08:43:07 PM
Could someone tell me how to set up my account so every new post on poiscenter will be sent to my email? When I tried clicking on the "subscribe" button at the poiscenter home page it just linked me to a bunch of html code it seemed. Actually that was when I used chrome. When I used firefox clicking on that gave me an option to subscribe to the feed using several options such as "Live Bookmarks" or "Microsoft Office Outlook", but I don't think I ever use either of those.

If I subscribe using the "Google" option will it send the feed to my gmail?

I tried subscribing using the "Google" option and now it's telling me I have to make a homepage with "iGoogle" lol. I'm so confused.

Edit- I tried subscribing using Internet Explorer and it seemed to work, but it looks like it has only reported my last 5 posts so far.

Edit2- I've been looking into how to get an RSS feed from here using chrome(my preferred browser), but it seems chrome is just horrible when it comes to RSS feeds in general. If anyone knows how I could set it up in chrome or how I could have the feed sent to my gmail account that would be great.

Edit3- I've subscribed to "FeedReader Online" and "Bloglines" and was able to subscribe to the RSS feed from those two sites, which is working in chrome. Well this has been an adventure.
Title: Re: This may seem like a familiar place.
Post by: poiseidon on June 07, 2013, 01:41:30 AM
Hey I always check on [recent posts] at the bottom of the home  page. This way I don`t miss anything.
Title: Re: This may seem like a familiar place.
Post by: demografx on June 07, 2013, 04:01:27 PM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.

Ditto!! :) :)
Title: Re: This may seem like a familiar place.
Post by: Stef on June 07, 2013, 06:22:24 PM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.

You're welcome, Vincent M and everyone.

There really won't be much -- if anything -- to advise you all about in the next several months.  NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals.  Then, it's another waiting game -- the final determinations are made in late November/early December.

So -- if you don't hear more from me about your grant -- don't think it's bad news!!!  No news is just no news!

Stef
Title: Re: This may seem like a familiar place.
Post by: poiseidon on June 08, 2013, 01:18:55 AM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.

You're welcome, Vincent M and everyone.

There really won't be much -- if anything -- to advise you all about in the next several months.  NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals.  Then, it's another waiting game -- the final determinations are made in late November/early December.

So -- if you don't hear more from me about your grant -- don't think it's bad news!!!  No news is just no news!

Stef

Hey Stef!
Do you mean that the research will actually start on december? How long do you think according to your previous experience we will have to wait before any result? 2014? 2015?

Thanks
Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 08, 2013, 01:04:06 PM
Hey I always check on [recent posts] at the bottom of the home  page. This way I don`t miss anything.

The problem with the recent posts section is that it only records the last ten pages of posts, which is sometimes filled within a couple weeks so if I don't visit for a couple weeks then I have to go clicking through every single thread on the forum which is time consuming.

Since I have set up 3 different places to receive the RSS feed from here I was able to compare them today. So far bloglines.com is the only setup that has worked to reliably receive all the posts from here, but it's still only been a couple of days so it's not fully tested.

Feedreader.com is just plain glitchy and is now not even able to load my feed from poiscenter. Actually I tried logging out and back in and now it is loading the feed, but it has missed a lot of posts in the past couple days.

While the feed reader on internet explorer is easy to access since it's integrated into the navigation bar of the browser it is not feasible, because it has missed a lot of the posts from this site that were posted yesterday and today.

I couldn't figure out how to set up the feed using mozilla firefox.

Does anyone know how to do this or am I the first one who has tried to figure it out? I keep thinking there must be some way to convert the "recent posts" section into a big thread that contains all of the posts ever posted on this site or even maybe just increase the number of pages recorded from 10 to about 50 or 100 pages so the members who've missed a few months of posts can easily get caught up when they return.
Title: Re: This may seem like a familiar place.
Post by: Daveman on June 08, 2013, 07:45:59 PM
Hey I always check on [recent posts] at the bottom of the home  page. This way I don`t miss anything.

The problem with the recent posts section is that it only records the last ten pages of posts, which is sometimes filled within a couple weeks so if I don't visit for a couple weeks then I have to go clicking through every single thread on the forum which is time consuming.

Since I have set up 3 different places to receive the RSS feed from here I was able to compare them today. So far bloglines.com is the only setup that has worked to reliably receive all the posts from here, but it's still only been a couple of days so it's not fully tested.

Feedreader.com is just plain glitchy and is now not even able to load my feed from poiscenter. Actually I tried logging out and back in and now it is loading the feed, but it has missed a lot of posts in the past couple days.

While the feed reader on internet explorer is easy to access since it's integrated into the navigation bar of the browser it is not feasible, because it has missed a lot of the posts from this site that were posted yesterday and today.

I couldn't figure out how to set up the feed using mozilla firefox.

Does anyone know how to do this or am I the first one who has tried to figure it out? I keep thinking there must be some way to convert the "recent posts" section into a big thread that contains all of the posts ever posted on this site or even maybe just increase the number of pages recorded from 10 to about 50 or 100 pages so the members who've missed a few months of posts can easily get caught up when they return.

WOW, thanks for the effort. I see every once in a while that the feed seems to miss a thing or two, but maybe I'm not sure how much.

I use the RSS configuration on Outlook Express. I think other mail clients have RSS feed management. It seems to work fairly well, but I honestly couldn't say how much I might be missing.

Another is google reader.

In any case, the RSS feed IS better than the "Last Posts Since last visit" link. I don't know why, but this does seem to miss quite a few post.

Thanks for investigating and reporting.

Good work you do for the cause of POIS.

Title: Re: This may seem like a familiar place.
Post by: sameer7777 on June 09, 2013, 05:10:53 AM
We should have a button to check all the post .... So we should not miss a single post pls advice ???
Title: Re: This may seem like a familiar place.
Post by: nenexx on June 09, 2013, 06:28:32 AM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.

You're welcome, Vincent M and everyone.

There really won't be much -- if anything -- to advise you all about in the next several months.  NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals.  Then, it's another waiting game -- the final determinations are made in late November/early December.

So -- if you don't hear more from me about your grant -- don't think it's bad news!!!  No news is just no news!

Stef

When will the actual research start?
Title: Re: This may seem like a familiar place.
Post by: demografx on June 09, 2013, 08:33:01 AM

Everybody, we can help out the research process by going here

http://tinyurl.com/k9noay9

and telling the researchers what POIS is.

What has helped you.

What makes it worse.

This is our opportunity to have a voice.

[
Title: Re: This may seem like a familiar place.
Post by: demografx on June 09, 2013, 08:45:30 AM

The answers [to POIS] are around the corner!
 
Stef

Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 09, 2013, 11:53:14 AM
WOW, thanks for the effort. I see every once in a while that the feed seems to miss a thing or two, but maybe I'm not sure how much.

I use the RSS configuration on Outlook Express. I think other mail clients have RSS feed management. It seems to work fairly well, but I honestly couldn't say how much I might be missing.

Another is google reader.

In any case, the RSS feed IS better than the "Last Posts Since last visit" link. I don't know why, but this does seem to miss quite a few post.

Thanks for investigating and reporting.

Good work you do for the cause of POIS.

The "Recent Posts" link at the bottom of poiscenter has never missed a post to my knowledge. Bloglines.com has failed the test as it has missed an entire page of posts that I just read over in the recent posts section. I didn't try Google Reader, because it is going to be shut down on July 1 of this year. It's looking like when I return I'll be forced to click through every single thread on this forum in order to catch up. Daveman, is there really no way to configure the "Recent Posts" section to record more than 10 pages of posts? Could you look into this?

edit- Figured out how to set up microsoft outlook. The password required was just for my email account that I already previously had, but for some reason underneath the box it said it needed a password given to me by my isp, which confused me. I'll test outlook in the upcoming days.
Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 09, 2013, 12:24:18 PM
We should have a button to check all the post .... So we should not miss a single post pls advice ???

I agree, but it seems as of now the only way to ensure you've read every post is to either regularly read the "Recent Posts" section or click through every single thread on the entire forum.
Title: Re: This may seem like a familiar place.
Post by: Stef on June 10, 2013, 04:28:33 PM
I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.





You're welcome, Vincent M and everyone.

There really won't be much -- if anything -- to advise you all about in the next several months.  NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals.  Then, it's another waiting game -- the final determinations are made in late November/early December.

So -- if you don't hear more from me about your grant -- don't think it's bad news!!!  No news is just no news!

Stef

Hey Stef!
Do you mean that the research will actually start on december? How long do you think according to your previous experience we will have to wait before any result? 2014? 2015?

Thanks

Hi poiseidon!

The award recipient of your grant won't be determined until late November or early December, 2013. It's ~ a 10-month process.

Then once the researcher is chosen, he/she needs to get all of the required documents to us -- these include copies of the medical institution's Internal Review Board approval (called an "Ethics Committee" outside the US) -- which insures the protection and rights of patients involved in a study -- and also a copy of the patient consent form.  Depending on the institution, this can be accomplished very quickly -- or a few months may pass.

The POIS study will be in progress for one year. So -- the grant may not be completed until early 2015, and therefore, there may be no strong reporting of research findings until then. But the researcher(s) must provide interim progress reports to NORD's MAC (one at six months, then one at the end of the year).  There is a portion that they must include which we'll be able to provide to the forum -- it's specifically meant to keep those who donated the funds up-to-date. We will definitely post that on your forum page.

But -- that information will be of a general nature. I can almost guarantee this will be the case until their manuscript is published.

FYI -- depending on the researcher who receives your grant -- your forum members may be able to establish an independent relationship with him/her.  It happens frequently, and simply depends on the personality of the researcher.  If that happens, you will probably be able to get more frequent "informal" updates. 

For the POIS grant, I can't envision the study not involving humans (as opposed to lab rats) - so you will probably be able to establish a relationship -- he/she will likely be contacting some or all of you for samples of blood, semen, or to undergo x-rays (paid for by the grant).

I wish it could go faster -- but research is often a slow process.  If it's rushed, it's not worth anything.

Stef

Title: Re: This may seem like a familiar place.
Post by: Jon on June 11, 2013, 02:14:55 AM
Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.
Title: Re: This may seem like a familiar place.
Post by: LAPOISSE on June 11, 2013, 06:11:12 AM
Just a quick though  : I've been recently convinced that the mental/psychological status is an important component in all that. It's like being stressed, negative, affraid, etc has a kind of retro feed back loop in the body and cause more physical unbalances ; emotions are hormons and neurotransmittors(we don't know how it works but it is 100% sure).

So my advice is try to work on your mental by seing somebody and working in your emotions (not necessarly a shrink, i found a doc very recently who have a very interesting approach in all that, you can do relaxation, etc).

Regarding the physiologic, have you tried to look at free copper ? The problem of elocution and facial expression are quite common with copper poisoning ; mineral unbalance are my new area of interest ; really not sure about that but it's quite promising. My belief is there is something between no problem and wilson disease ;

Good luck and keep faith
Title: Re: This may seem like a familiar place.
Post by: Vincent M on June 11, 2013, 11:49:23 AM
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.

On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.

It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.
Title: Re: This may seem like a familiar place.
Post by: Ccconfucius on June 11, 2013, 12:55:15 PM
Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Jon am in a similar position as you in-terms of the of the cognitive problems.  I never fully recover cognitively anymore, before my recoveries used to feeell majestic i felt on top of the world now even after three weeks i dont feel there and when i hang out with people for long periods they start to notice.  That part is really starting to hurt my confidence and am always on guard not to be referred to as been dumb. ( i have got several hints of that from people, i just kind act like i didnt notice or hear).  Caffine/ 5hour energy do not give any kind of boost anymore like they used to.

Physically most of my problems have improved even if i do multiple orgasms as long as i get good night rest sleep i feel better.   I believe my physical problems has improved because of vit D. When i dont use it my physical problem ( mostly low energy) come back. You should probably check your vit d and see if its low.

Am not even trying to improve symptoms during pois anymore am trying to get rid of constant pois.   i feel if i can rid of constant pois i can once again have the motivation to fight frequent orgasm.
Title: Re: This may seem like a familiar place.
Post by: Daveman on June 11, 2013, 03:20:48 PM
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.

On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.

It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.

WOW, I didn't think it was that much!! Hope I'm not missing too many SPAMs... (to delete and report) Don't forget, if  you see SPAMs, everybody, click the "report to moderator button" below the post.

Title: Re: This may seem like a familiar place.
Post by: FornicationDENIED on June 11, 2013, 05:29:49 PM
Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Jon am in a similar position as you in-terms of the of the cognitive problems.  I never fully recover cognitively anymore, before my recoveries used to feeell majestic i felt on top of the world now even after three weeks i dont feel there and when i hang out with people for long periods they start to notice.  That part is really starting to hurt my confidence and am always on guard not to be referred to as been dumb. ( i have got several hints of that from people, i just kind act like i didnt notice or hear).  Caffine/ 5hour energy do not give any kind of boost anymore like they used to.

Physically most of my problems have improved even if i do multiple orgasms as long as i get good night rest sleep i feel better.   I believe my physical problems has improved because of vit D. When i dont use it my physical problem ( mostly low energy) come back. You should probably check your vit d and see if its low.

Am not even trying to improve symptoms during pois anymore am trying to get rid of constant pois.   i feel if i can rid of constant pois i can once again have the motivation to fight frequent orgasm.

Permanent damage? This is VERY bad.
I just found out that  that pharmacological agonists of 5-hydroxytryptamine2A (5-HT2A)serotonin receptors can block the pro-inflammatory effects of Tumor Necrosis Factor (TNF) on smooth muscle vascular cells.5-HT2A receptor is involved in cognition. TNF is supposed to promote inflammatory reactions in Crohns disease. This is interesting because  serotonin appears to be pro-inflammatory, as a number of studies have shown depletion of serotonin within the CNS acts to reduce animal models of inflammation such as adjuvant-induced arthritis. However it suppresses multiple responses to TNF. Testing to find TNF active have failed, but I never had orgasms before testing. My Crohn diagnostic is not 100% accurate because of lack of acces to the small intestine, and gluten free diet helped me more than drugs, but any complex protein is not recommended for any IBD because it can cause issues on a damaged intestinal lining.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861806/
Acetylcholine excess includes all POIS symptoms, brain fog, nightmares, diarrhea, flu like symptoms, and maybe decreased levels in the brain of the neurotransmitters: serotonin, norepinephrine,  and dopamine. Maybe POIS disrupts Serotonin.
TNF can cause premanent damage , read this  http://www.ncbi.nlm.nih.gov/pubmed/21728035
Also, modification of the noradrenergic signaling system occurs in some neurodiseases http://www.ncbi.nlm.nih.gov/pubmed/12176079
If I fail to control nocturnal emissions, those damn wet NIGHTMARES I am doomed if my theory is correct.
Title: Re: This may seem like a familiar place.
Post by: poiseidon on June 11, 2013, 08:36:03 PM
Hey guys. Of two things I'm sure for those who experience POIS even without orgasm since I experienced it myself. Overthinking makes it worse. I'm sure that under a very small extent it is in our head. I do feel worse since I know POIS exist. I always knew there was a correlation between my well being and abstinence. But nothing more than that. But last horrible winter in Europe worsened my physical symptoms, making my sinus really bad. So I Google it. This is how I knew about this fucking POIS.

Now abstinence is not the key. Unless you are fully committed and concentrated to completely eliminate any sexual thought and this is achievable with meditation or other techniques that involve the control of the mind. I made it once. I completely deconstructed sex from my mind. Ironically during this period of feeling great (talking of some years ago) I dated many many girls which wasn't really something I was used to. What amazed me the most was the fact that they were attracted to me in the first place and without any effort. Even walking on the street their look was different. Long story short I ended up with this amazing girl. But when we decided to do it, it seemed everything was shut down. Weeks of MENTAL and physical abstinence made me completely uninterested towards sex. It took me months to make it work again. I believe for some of us this is better than POIS. But at the time I still was a very young monkey craving for experiences so I lived it quite badly because in one way or another I couldn't find in sex the great experience everybody had. Either for feeling like shit if I was doing it or not being able to do it because of prolonged abstinence.

Anyways...

Don't expect to feel better just not Oing because what I do feel is that many of us misunderstand POIS symptoms with other ones. One for all depression. Which is linked to POIS but just because we do tend to overthink about it. There are so many people with wasted lives. 99.9999% don't have POIS.

We are made to cum as much as we are made to eat or to breath. Theres no point really to stay horny all day and feeling bad anyway. We are made to cum so we have to cum. No matter what.
To feel better we can't just wait in bed until we feel great. I'm sorry but this isn't going to happen.

Gotta work it in your head. Abstinence and being horny don't work well. This way you put your body under stress giving you symptoms that you relate to POIS but might not..

I hope it didn't sound arrogant.
Bless on all of you
Title: Re: This may seem like a familiar place.
Post by: demografx on June 11, 2013, 11:47:27 PM
"Fight the immediate reaction of some doctors: just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "

This is the only approach that has worked for me with ignorant, arrogant, or lazy doctors!

(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)

Please see our Welcome Page for more specific info in dealing with doctors. YOUR WAY!
http://tinyurl.com/lwwns6z

Title: Re: This may seem like a familiar place.
Post by: Jon on June 11, 2013, 11:59:21 PM
FornicationDENIED,

That is very interesting. You seem to know a good deal about the effects neurotransmitters and such.

I certainly hope that the damage isn't permanent. Its one thing to not be thinning sharply or correctly, but it definitely worries me to think that I may have lost cognitive potential that I cannot recover.

All I can say is that I'm 26 and I do not have the energy to do more than 1 or 2 activities all day. I find myself taking half of the day to fully wake up and afterwards I find myself nodding off. I've tried everything. I am at the point where I am just struggling to live everyday. I feel like I'm in a bad spot guys. I see everything declining more and more. I don't know what to do.
Title: Re: This may seem like a familiar place.
Post by: demografx on June 12, 2013, 01:13:06 AM
Jon, I felt like you, decades ago. I fought my way to here today, and now no more decades of waiting. As nordnurse says, "the answers to POIS are now around the corner", especially with our $31,000 grant that has already attracted some top flight world class medical researchers finally taking a hard, serious look at POIS!

Don't give up!
Title: Re: This may seem like a familiar place.
Post by: Daveman on June 12, 2013, 07:20:05 AM
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.

On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.

It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.

WOW, I didn't think it was that much!! Hope I'm not missing too many SPAMs... (to delete and report) Don't forget, if  you see SPAMs, everybody, click the "report to moderator button" below the post.



I tried to register in bloglines.com, but every username that I put they said was taken. Something wrong, because it didn't matter WHAT I put!

Title: Re: This may seem like a familiar place.
Post by: Stef on June 12, 2013, 07:35:52 AM
Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Hi Jon,

I just read your post.

I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood out for me while reading your post.

Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear!  There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!

Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.

It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.

Remember what demo wrote -- he, too, felt like you do now.  I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly.  But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.

You may not find those treatments on your own -- but research will do it for you.

At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms.  They did not know what to look for.  

Broken record about to start playing...  No one knows what POIS is! There has been no serious, solid research yet.

In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.

Stef  






 
Title: Re: This may seem like a familiar place.
Post by: demografx on June 13, 2013, 03:58:22 AM
Hey demo!
A quick update about my pursuit of endocrinologists. I contacted 15 "respected" and private ($$$$) endos.
Here's the result: 9 didn't even reply, 5 thought I was crazy and the last one was really interested in the whole thing.

He was really chilling and easygoing, I was his last patient and we talked for a couple of hours. I told him everything, about Waldinger, about the forum, about your successfull therapy. And then he said "THE Internet is a great invention" (he was quite old) when I told about the research grant.
He was willing to help but he made his point saying that going through TRT at my age (26) could make more damage than relief in the long run. Especially with this research that may give more answers in a year or two.
He basically told me to be to wait. "You waited 26 years now wait for one more and don't make stupid things in the meanwhile".

So I think I might listen to him.

poiseidon, yes, at age 26, TRT could conceivably mean HAVING NO CHILDREN if you do TRT.

At your age (and this close to NORD answers)...I am HAPPY that you are listening to this endocrinologist!
Title: Re: This may seem like a familiar place.
Post by: demografx on June 13, 2013, 04:14:03 AM
I changed my profile here @ POIScenter:

I  simply added the word "nearly" (see profile below, under each of my posts)...I'm *not* always 100% POIS-free with my treatment.

1. I am mostly retired, so I have FAR less daily stress than before.

I don't know how well I would do with POIS + daily occupational, work-people-related stress, as before.

2. I still cannot explain why I'm "POIS-free" sometimes, and at other times (especially stressful), some POIS (minor but still ugly POIS!) still comes back, even with my adding Levitra Rx + other meds to the mix, including controversial mood meds.

3. I am very grateful for the forum - and others - encouraging me strongly to see a [POIS-sympathetic] endocrinologist in 2008. The forum consensus at the time was that "POIS is a hormonal imbalance". So I followed. And got LUCKY!
Title: Re: This may seem like a familiar place.
Post by: demografx on June 13, 2013, 06:07:43 PM
[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

 = = = = = = = = = = = = = = = = = = = = = = = = =

yasienhossam, thank you for your excellent questioning!

I hope Waldinger will respond.

Best regards,
Demo

ps - contact info

Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com


Title: Re: This may seem like a familiar place.
Post by: demografx on June 14, 2013, 06:16:46 AM
Hey guys. I have not been on here in a while but I am in a tough spot right now.

I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.

Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.

I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.

Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.

I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.

I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.

Best,

Jon.

Hi Jon,

I just read your post.

I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood our for me while reading your post.

Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear!  There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!

Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.

It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.

Remember what demo wrote -- he, too, felt like you do now.  I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly.  But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.

You may not find those treatments on your own -- but research will do it for you.

At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms.  They did not know what to look for. 

Broken record about to start playing...  No one knows what POIS is! There has been no serious, solid research yet.

In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.

Stef   






 


Stef, you have brought such incredibly great Hope to this Forum.

THANK YOU! :)
Title: Re: This may seem like a familiar place.
Post by: Stef on June 14, 2013, 10:12:18 AM


[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]

Dear Prof Waldinger,

It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which  said that you refused  our work that was accepted (with reservation) by the other 3 referees.  We think and feel that it was not fair enough.
 Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to  what you think that; the idea of atopy may be a precipitating factor for POIS  is yours and not ours ?!.  We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive  and body pains he feels post orgasmic; his atopy flares  up  eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals,  by the full length paper to ask you your experience as the only reporter of this syndrome - at that time -  but sadly enough we didn't receive any reply.  Please, return back to your archive. Moreover;  in 2010; we shared the ISSM forum by this case report  also before you mention at all any relation of POIS to atopy -  you mentioned it only in your publication at 2011 -  and many of our colleagues who are ISSM members  shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented  as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK  , and published in its  proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr  Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings  but the references mentioned and our patient didn?t get any benefit from trying these drugs;  please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard?  is it  enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know -  and it is scientifically proved -  that this test  has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our  immune system.  Immunologic tolerance to it  is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood  Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex.  It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it  as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that;  allergy to the patient's  own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true -  POIS patients will  be mostly infertile as well. So; as you depended only upon the unreliable  skin prick test  and for the afore mentioned scientific facts,  we  - and we think that we will be shared by anyone who is interested in andrology -    think that; your conclusion is not right and we can't scientifically accept  that the cause of POIS is allergy to own semen.  
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!.  Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit  if any is not more than placebo.
 
Thanks,   
Prof. Dr Abdalla attia & Dr  Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt

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yasienhossam, thank you for your excellent q