Author Topic: Free Flow Discussion about POIS  (Read 1012803 times)

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 (hipervínculo) 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!

demografx

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Re: This may seem like a familar place.
« Reply #30 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
« Last Edit: June 28, 2012, 02:05:52 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 #31 on: June 28, 2012, 01:56:14 PM »


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


Click here to CURE POIS:

Click here to read more about The POIS Medical Fund

« Last Edit: June 28, 2012, 02:03:43 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

Daveman

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Re: This may seem like a familar place.
« Reply #32 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.

 
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!

demografx

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Re: This may seem like a familar place.
« Reply #33 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


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 #34 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!

« Last Edit: June 29, 2012, 07:57:35 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 #35 on: June 29, 2012, 02:30:22 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

Stef

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Re: This may seem like a familar place.
« Reply #37 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)





tantalus

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Re: This may seem like a familar place.
« Reply #38 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



« Last Edit: June 30, 2012, 05:23:36 AM 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

Starsky

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Re: This may seem like a familar place.
« Reply #39 on: June 30, 2012, 07:07:51 AM »
Tantalus, your english is not so bad, i undesrtand what you are writing to us.