[daveman]

Hello

I am 58 year old male having almost all the symptoms described under POIS. Thanks to my wife who gave newpaper clip related to this topic. She is the only one I had told about my problem and we both were wondering what exactly it is. I have been suffering for about more than six years or so. I will make a detailed post about how I feel and some related history as well. At this stage I would like to contact Dr.Marcel Waldinger. Anyone with his contact info..Please let me know.

Thanks
Ghunna

Dr. Waldinger's post is on page 450. The link below should get you there.

http://www.thenakedscientists.com/forum/index.php?topic=6576.11225

Everything  you need is there.

[daveman]

Maybe it's not present in pre-sperm
OR
Maybe the quantity is no enough to start the auto-immune reaction.

And then why this delay ? 30 min in majority of cases in dr.M.Waldinger' studies. We need to make a statistic on the forum on this point.

My delay : 240-600 min after orgasm.

For some reason, the option to quote isn't showing for me. I did this quote manually!

My initial delay is from 15 min to 90 min MAX for onset.

[Nightingale]

So that fellow sufferers can follow along, I'm going to be seeing 3 doctors next week:

First, my endocrinologist, who I will ask about checking my testosterone levels (I gave him copies of each of the POIS studies out there, hopefully he's read them by then)

Second, my urologist, who I'll have to educate as he's not seen the studies as it's my first appointment with this particular one

And finally, my allergist, who is in the same class as my urologist and will have to be educated about POIS and injecting semen into me 8-0

[rock27]

@ ccconfucius. It's also symptoms so not fully recovering.

[CertainlyPOIS]

My symptoms kick in pretty much immediately after about 5 mins especially cognition.

[daveman]

So that fellow sufferers can follow along, I'm going to be seeing 3 doctors next week:

First, my endocrinologist, who I will ask about checking my testosterone levels (I gave him copies of each of the POIS studies out there, hopefully he's read them by then)

Second, my urologist, who I'll have to educate as he's not seen the studies as it's my first appointment with this particular one

And finally, my allergist, who is in the same class as my urologist and will have to be educated about POIS and injecting semen into me 8-0

Some thoughts about "T" measurement.

Given that it is thought to be an allergy, I would have thought that "T" levels wouldn't have been effected at all. That is, the levels of sperm are as they should be, we're just allergic to them. So "T" shouldn't adapt itself to produce more.

We know the doc's say that the levels are within range (usually), although we find them usually on the low side. So if they are being modified by the allergy, it's less than the doc's expect, not knowing that there IS an allergy.

Taking "T" has help some of our members because it has reduced or stopped sperm production.

So take that in mind when speaking to your doctors. Maybe they won't think we're so much out of our heads if it's all more in context.

Or at least in a more viable context!!

[demografx]

I would like to contact Dr.Marcel Waldinger.

HIS CONTACT INFO IS BELOW. BEST WISHES.

ghunna, welcome to the POIS thread of The Naked Science Forum!




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


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

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:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat


* Most recent POIS Research Studies, 2011 *

If you will send Prof. dr. Waldinger an e-mail, stating that you have read his message on the Forum, at http://www.thenakedscientists.com/forum/index.php?topic=6576.msg340138#msg340138 and that you are willing to fill in a questionnaire, he will send you the copies of both 2011 research articles by return through email. At a later date, he will send you the questionnaire which, after having filled in, you should send him back by e-mail.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


First POIS Research Study, 2002

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

  
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


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


There are a couple of ways to get any or all of the above 3 studies: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF.

Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

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

Remember to put a quote around my name, i.e., "demografx".


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 OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For nearly 4 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 nearly 1,000,000 page visits. Not bad for a rare malady!

[demografx]

ghunna, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: almost 4 years' worth of posts (over  10,000 posts!) from 150+ Forum members, and an additional 150 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#.

[Nightingale]

THanks Daveman, I'll take that into consideration when I go!

[demografx]

Testosterone update

For those of you interested in following the POIS-testosterone successes (6 known in this forum), I thought I would publish my recent test findings. I have been on TRT (testosterone replacement therapy) for 2 years now, 15mg Androderm patches (3 x 5mg) daily.

                                                                              Reference Range

Serum Testosterone (total)     1122 ng/dL                        350 - 1030

% Free Testosterone              2.5                               1.5 - 3.2

Free Testosterone, S            281  pg/mL                         52 - 280


My numbers appear healthily within the norm. When I first consulted my endocrinologist for POIS treatment 2 years ago - thanks to the strong suggestions from this forum - my numbers were significantly lower than average.

With my initial treatment of 10mg daily, which helped, I asked for and received a 50% increase to 15mg, and I felt even better.

I still welcome further improvement. Perhaps with Dr. Waldinger's hyposensitization.

This is NOT a medical recommendation, simply my case. If you think you might benefit from this treatment, get tested, preferably with an endocrinologist.

[demografx]

Taking "T" has help some of our members because it has reduced or stopped sperm production.

Sorry to be disagreeable, but I think my sperm production ramped up significantly. I think that my endo said that it reduces/stops at supraphysiologic doses.

One of my pet theories has been that sperm regeneration speed is key. Slow sperm production correlated with my intense POIS. When it speeded up with TRT, my POIS disappeared as I more quickly became "full".

[CertainlyPOIS]

demografx have you ever tried an inflammation drug with your testosterone to see if recovery gets closer to 100%.

[demografx]

demografx have you ever tried an inflammation drug with your testosterone to see if recovery gets closer to 100%.

No, but the combination of T and norethisterone-progesterone (the male contraceptive idea we've been discussing for a long time) sounds like a very interesting possibility.

What kind of inflammation drug were you thinking? NSAIDS?

[Vandemolen3]

Today I received the results of a blood test, urine test and semen test. Everything was normal. Testosterone was 12. That's a bit low but normal. The free T. was 362. My urologist said that 362 is a high level. And free T. is more important than normal T. The urologist gave all the results.

Next week I will receive the results of vitamin D. I think that's still too low. The last test I had 12 and it should be at least 80.

[demografx]

Van, thank you for sharing the test results with the forum!

[daveman]

Taking "T" has help some of our members because it has reduced or stopped sperm production.

Sorry to be disagreeable, but I think my sperm production ramped up significantly. I think that my endo said that it reduces/stops at supraphysiologic doses.

One of my pet theories has been that sperm regeneration speed is key. Slow sperm production correlated with my intense POIS. When it speeded up with TRT, my POIS disappeared as I more quickly became "full".

So much for the "unified theory" idea.

I understood that in Caucasians plain "T" has lesser effect, and that with progestins, the "T" dose required is "much less".

What would "supraphysiologic doses" be, compared to the 15 mg that you take for instance?. And do they shut down sperm at those doses or shut down the "T" production system at those doses.

It really would be interesting to see what happens to your sperm!!

Being that it "seems to conflict" with the Dr. Waldinger results, I'm really interested in what is actually going on in the "T" cases, maybe shed light on some viable parallel theory, or see how it may not really conflict somehow.

[daveman]

Hey Everyone
I have not visited the forum in quite some time. I was checking out some articles on google news and I came across the reports on the new study.  It is good to hear that the condition started to get some publicity.  I don't know if anyone remembers me, but on my last post I offered that for me the culprit is food allergies.  I would have never expected a connection between food allergies and my poor cognitive condition after orgasm.  The first time I noticed any problems with POIS was after orgasm, and I believed I had in some way irreparably damaged my body.  Your body wants to return to a homeostasis and I could not understand why even after abstaining, that I would still be nervous, depressed, have an inflamed prostate.  I started to think about periods in my life that I had felt better even without abstaining.  I realized that I felt the best during the periods when my dairy consumption was zero.  I started to research allergies and I came across topics about histamine and undermethylation.  I realized that many of the same symptoms of high histamine corespond with my experience with Pois.  An allergic reaction is a histamine release against what your body classifies as a threat.  I actually did some testing through a naturpath and found that I do have a reaction to casein (dairy), gluten (wheat), and eggs.  I eliminated these items from my diet, started taking co factors to increase my bodie's S-Adenosyl methionine, and also some herbs to reduce cortisol.  It has been almost a year now and I feel great.  I believe what was happening to me, based on my research and lab test results, was that food and environmental allergies were causing increased histamine levels.  Increased histamine levels were decreasing Serotonin, Acetylcholine, and Dopamine.  Dopamine is a Prolactin inhibitting factor, they balance eachother,  and orgasm was just increasing Prolactin and inhibiting an already depressed Dopamine level.  An increased Prolactin level also inhibits the release of Testosterone from the pituitary gland.  I was conditioned to believe that orgasm had caused this condition because it was after orgasm that I felt the worst.  They are correlated, but without causality.  I am not surprised about the results of the new study.  Some individuals on the forum disagree with the Semen allergy.  Last time I posted, I urged everyone to consider food and environmental allergies.  A semen allergy is possible, but I suggest thinking about other potential allergens once again.  It is life changing.  Best of Luck!

Why aren't there like 900,000,000 more people with POIS then I wonder?

There's no doubt that in POIS one is more sensitive to other allergies and some substances can aggravate POIS, but POIS is the central factor, or as I said, there'd be many. many more cases of POIS.

[demografx]

Taking "T" has helped some of our members because it has reduced or stopped sperm production.

Sorry to be disagreeable, but I think my sperm production ramped up significantly. I think that my endo said that it reduces/stops at supraphysiologic doses.

One of my pet theories has been that sperm regeneration speed is key. Slow sperm production correlated with my intense POIS. When it speeded up with TRT, my POIS disappeared as I more quickly became "full".

What would "supraphysiologic doses" be, compared to the 15 mg that you take for instance?. And do they shut down sperm at those doses or shut down the "T" production system at those doses.

I posted my endo's statement about that here earlier, and he simply referred to supraphysiologic as "excessive doses as those often taken by bodybuilders".

It really would be interesting to see what happens to your sperm!!

No, thanks! []

Being that it "seems to conflict" with the Dr. Waldinger results, I'm really interested in what is actually going on in the "T" cases, maybe shed light on some viable parallel theory, or see how it may not really conflict somehow.

Dr Waldinger said to me that it doesn't conflict at all. It was (obviously) one of my first questions to him. He didn't elaborate, but said that there may be a subset of men who react favorably to testosterone.

Also, I wouldn't rule out hyposensitization for myself to boost my treatment. Or anything else for that matter!

[ophicus1213]

Daveman maybe they are among millions of Americans who jump between the benzodiazepines and SSRI's that their GP has prescribed to them.  People who do not know why they feel the way they do, and have not considered researching on their own. 

[demografx]

I just seen Dr.Waldinger interviewed on TV for a BBC 1 science program about Pleasure and Pain.
He was talking about persistant arousal syndrome and it featured a woman with it. He seems like a nice guy!

Several photos of Dr. Waldinger from that session (top, then scroll down for more pics):
http://www.psas.nl/content/laatste/