Author Topic: Free Flow Discussion about POIS  (Read 577171 times)

pep

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Re: This may seem like a familar place.
« Reply #15 on: June 25, 2012, 01:19:48 PM »
Demo,

maybe yo can linked (hipervĂ­nculo) the photos to NORD

for contact with me: apoisblog@gmail.com

Barcelona (SPAIN)

24 years old (1988). POIS since I was 21.

poisenglish.blogspot.com.es
poisspanish.blogspot.com.es

eur79m

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Re: This may seem like a familar place.
« Reply #16 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* ...

Starsky

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Re: This may seem like a familar place.
« Reply #17 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.

kurtosis

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Re: This may seem like a familar place.
« Reply #18 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.

Starsky

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Re: This may seem like a familar place.
« Reply #19 on: June 25, 2012, 04:57:08 PM »
I did tested prolactin and it is under the normal range.

demografx

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Re: This may seem like a familar place.
« Reply #20 on: June 25, 2012, 11:39:42 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #22 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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #23 on: June 26, 2012, 12:06:13 AM »
Demo,

maybe yo can linked (hipervĂ­nculo) the photos to NORD



Thank you, pep!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

kurtosis

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Re: This may seem like a familar place.
« Reply #24 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. 

tantalus

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Re: This may seem like a familar place.
« Reply #25 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)



« Last Edit: July 09, 2012, 04:25:27 PM by tantalus »
4 years desensitized, health progr. average 70%  top 90%, ,overreaction stops 3X (herpes+meningeal irritation, sideeffects towards end ( hyperacusis), stopped at 4to1, retrograde after stop,re-entry soon. negative progesterone effect pois. . (new supervised med. trial planned soon) Niacin not tried

demografx

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

Testosterone greatly ameliorated my POIS symptoms.

But if you're planning a family, there are fertility risks you should discuss with your doctor.
« Last Edit: December 10, 2018, 08:15:27 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familar place.
« Reply #27 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
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Stef

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Re: This may seem like a familar place.
« Reply #28 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


Daveman

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Re: This may seem like a familar place.
« Reply #29 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!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!