[Green]

Quite right - thank you Guthrie  []

one thing worth mentioning is that many (most?) members of the forum report having problems only after ejaculation - in their cases, sexual activity without ejaculation doesn't lead to them having POIS symptoms.

It's quite different for me, arousal causes POIS symptoms maybe ~ 20-30% that are short lived, but masturbation without ejaculation still leaves me in a dire state, and to get back to a state of normality would take longer than ejaculating. Also NE's ususally leaves me in a better state, rarely any POIS symptoms, strange.

I`m like u green. Maybe  we dont have allergy reaction to semen but neurotransmitter imbalance . I think we have a problem with neurotransmitters involved in arousal and orgasm ?

What u think ?

yay, I'm not the only one. I am not totally convinced by the semen allergy theory, I have my reasons. Following the forum and results it seems as though orgasm/arousal is setting off the immune system and the body starts to self destruct, for me possibly I think it might be a problem with the seminal plumbing, I've got urinary problems also.

On the subject of neurotrasmitters, POIS probably destroys them also, but testing isn't heavily relied upon. I've had my adreniline tested, it came back 2.5 greater than than the maximum figure quoted on the reference range. I also take testosterone which boosts dopamine and take 100mg 5HTP ed every other month.

I'm trying hard to get my hormones, diet and exercise in check, then if that doesn't work start exploring other avenues.

[daveman]

Quite right - thank you Guthrie  []

one thing worth mentioning is that many (most?) members of the forum report having problems only after ejaculation - in their cases, sexual activity without ejaculation doesn't lead to them having POIS symptoms.

It's quite different for me, arousal causes POIS symptoms maybe ~ 20-30% that are short lived, but masturbation without ejaculation still leaves me in a dire state, and to get back to a state of normality would take longer than ejaculating. Also NE's ususally leaves me in a better state, rarely any POIS symptoms, strange.

I`m like u green. Maybe  we dont have allergy reaction to semen but neurotransmitter imbalance . I think we have a problem with neurotransmitters involved in arousal and orgasm ?

What u think ?

yay, I'm not the only one. I am not totally convinced by the semen allergy theory, I have my reasons. Following the forum and results it seems as though orgasm/arousal is setting off the immune system and the body starts to self destruct, for me possibly I think it might be a problem with the seminal plumbing, I've got urinary problems also.

On the subject of neurotrasmitters, POIS probably destroys them also, but testing isn't heavily relied upon. I've had my adreniline tested, it came back 2.5 greater than than the maximum figure quoted on the reference range. I also take testosterone which boosts dopamine and take 100mg 5HTP ed every other month.

I'm trying hard to get my hormones, diet and exercise in check, then if that doesn't work start exploring other avenues.

I think the word "allergy" is misleading. Although it may be technically an "allergy mechanism", we associate the word with something that seems to be a lot different than POIS.

Perhaps "auto-immune" reaction would spark a more in line appreciation.

In any case the plumbing has everything to do with the disorder as described by Dr. Waldinger.

One reason I'm so in favor of the Dr. Waldinger hypothesis is the result of an experience I had when I was yonger. I'm not too proud of it, but on more than one occasion when I was experimenting with drugs, I injected foreign substances into the bloodstream (I was in a "try anything once phase") that caused very similar, if not more dramatic reactions to POIS. In those occasions, well maybe one in particular, it was obvious that my system was reacting against this foreign agent. Wasn't too pleasant, and the only thing that has had a sensation similar.

Well that was far before POIS and unrelated, my POIS came a couple of dacades later.

On the other hand, other parallel causes shouldn't be discarded, unless our collective experience here has demonstrated that such cause is a dead end road.

On that note, we really don't have an easy access database here on dead end streets. (Or do we?)

[RAries]

Hello all..

What a major relief to find this message board and finally find some peace knowing that this 7 year mystery ailment I have been dealing with, that no one seemed to be able to relate to or understand, isn't such a mystery after all and there are other people out there (you all) also dealing with the same thing I have been. 

I've come up with so many different thoughts of what it could be, visited doctors, but with no real answer.  I had pretty much written off any hope of change, and just accepted the cards that had been dealt, until just recently.  To finally see the medical report that came out in January, along with many of all your thoughts on this message board for once nailed all of it right on the head and gave me a huge breath of relief knowing this wasn't a 1 of a kind thing.

Seeing this board brings on all kinds of thoughts and questions that I want to ask, but probably best to read back through the archives rather than rattle off the same ones that everyone asks.

A little about how it effects me - It definitely comes on very quickly after orgasm (within minutes) and can easily last a week, if not longer, with all of the same many symptoms in the article as well as what people post on this board.  However, Ive also come to find when under a lot of stress it can bring it on and make it that much worse.  It also can cause a rapid heartbeat, shortness of breath sometimes while sleeping (waking me up), which I have noticed a couple posts of people having similar feelings -(this is one of the symptoms that usually worry's me the most)

It's also caused me to have a sweating problem which is something I never experienced prior.  I used to not sweat much at all on a regular basis, but it seems like even minor activity causes this now.  I imagine its often related to the Flu Like symptoms, but still seems to be apparent even when Im not feeling at my worst.

I hate feeling that I am operating at what feels like 70% of who I am as a person and what I am capable of - which ultimately effects everything in life - personal, work, overall enjoyment etc. Im sure most everyone here can relate.

I am ready to be done with this, as I'm sure anyone here with same feelings can attest.  I know there is no immediate answer just yet, but knowing there is a large group out there talking gives me hope that an answer is around the corner.  It really seems to come down to awareness at this point and all of us reaching out where possible - With Prof. Waldinger's research now public it feels like we have a lot more ground to stand on now when reaching out to friends, family, doctors etc.  They still may not understand exactly what its like to deal with, but at least there is some substantial studies here that can't be ignored.

Thats all for now.  I look forward to reading more, and hearing everyones thoughts, advice and stories.

Thanks for listening and for making this much needed ongoing discussion a reality.

[demografx]

RAries, 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 over 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]

RAries, 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#.

[demografx]

Thanks for listening and for making this much needed ongoing discussion a reality.

And thanks for your very nice words about this forum!

[afghan666]

Hello evryone,
   A thought came to my mind.we have guys in forum who react badly to alcohol.my face goes pale if i smoke cigarettes.we might be having a sensitive or weak LIVER.the liver is responsible for producing antibodies,amino acids,hormones,blood,affects balancing sodium and neurotransmitters.it controls cholestrol,etc.
  there must be a relation between pois,allergy,neurotransmitter imbalance and liver.
 Fenugreek has liver protective properties.
 Turmeric is a gud liver protectant.i ll be checking out herbs used for hormone balancing and herbs good for live
 By the way fenugreek+ginseng+sulbutiamine+gingko biloba+optimen tabs hav an enormous improvement in pois and i am O ing daily.the only thing am concerned is whether fenugreek's effect will last or if i might build up some sort of tolerance.

[afghan666]

DEAR ALL,PLZ READ CAREFULLY : Honestly speaking,,,,,and after tons & tons of research; consultations ; research; readings & trial & errors : iv personally &  with respect to all opinions reached to that conclusion : For the general population (except listed exceptions below) POIS is nothing more than neurotransmitters brain deficiency related to excessive & prolonged stress & leading to Chronic fatigue syndrome like symptoms due to depletion of the body's key precursors & nutrients.
Causes :  Prolonged stress/ depression; poor nutrition; single/excessive sex; lack of exercise; pollution; anxiety; traumas & others.,,,
Exceptions : People suffering from preliminary disorders such as : Autoimmune; adrenal exhaustion; hormonal imbalance; STDs * others,,,,,,Usually those suffering from any single or combined of any of the above will suffer additional symptoms like allergies; fever; anorexia; pain and depending on each and every case ( Remember each and everyone is very different while the human body itself is very complex---> That is why there can't be a universal cure for everyone,,,,because each case needs to be tackled; diagnosed & treated differently and that is exactly why we have so many different cases & claimed cures on this forum,,,because every tested/ cured member is different!) 
Treatment cure for the general population : Gradually replenish serotonin & other neurotransmitter deficiency using natural MAOIS; exercise; sun baths; healthy nutrition; stress reduction ; relaxation techniques& others,,,,,Use of homeopathy & herbal medicine to re-balance the system & reach homeostasis during exhaustion & recovery phases.
Conclusion: To me & thx God after lots of suffering & hard work POIS is a closed case now! Though I still suffer from undesired symptoms from time to time ; Iam 100% aware of what it is going on with my system & specifically inside my brain . In addition I fully understand the thirst of POIS sufferers like me to learn & know more & get into the nifty tiny details,,,,but trust me the problem AND solution for the general population,,,,is much much MUCH simpler than it seems,,,,,Sometimes we drawn into the details & forget the big picture,,,,,,and that has in my opinion has been the case for POIS ,,,and again with my deepest respect to all researchers; specialists; active members; & moderators of this forum,,,,,get well everyone.
Regards,

Hello z-one. can u post more about this ?

maybe there are 2 types of pois : allergy and neurotransmitter related

a minority of people here have symptoms only from arousal or masturbation without ejaculation.. so maybe semen is not involved?

let`s discuss all possibilities guys thanks

We know theres a neurotransmitter deffiency but arent we supposed to find the source or the point of origin.............

[demografx]

We don't "know" there's a neurotransmitter deficiency. Testing is highly inaccurate. Some evidence, please.

[daveman]

We don't "know" there's a neurotransmitter deficiency. Testing is highly inaccurate. Some evidence, please.

Quite true Demo!

Although ONE point that Afghan666 makes is ALSO true. Even if there WAS, or WHEN there is some other dificiency, it is not enough to assume that it is the deficiency that is the cause. The point of origin, be it allergy or testosterone deficiency or whatever, may upset balances that cause secondary deficiencies like say, vitamin deficiencies or low neurotransmitter  levels.

What has made our work very difficult here is that we are dealing with a very complex system that involves very complex interactions. Because we have certain low levels ( I don't know, vitamin D or even dopamine for instance), perhaps we jump all over remedies to raise those levels, which in the end don't do much because the low levels are a side effect, not a root cause.

The same for eating well and taking vitamin supplements, or consuming NSAIDs until we are blue in the face, or whatever... Aren't we only compensating for some other root cause, a root cause that is not normal in the normal population, rather than really solving the problem?

[daveman]

BTW, I love the new InLine edit feature, much more fluent and comfortable.

[daveman]

Also BTW, I'm not against eating well and taking vitamin supplements, only that I don't think we should have to behave like saints just to live more like normal.

[Vandemolen3]

Today I did the skin pr.ick test. The result was positive. There was a big red spot on my arm. Yesterday I used Xyzal. I wasn't allowed to use antihistamines four days before the test. I didn´t knew that. The red spot could be bigger if I didn´t use Xyzal. But that's not for sure.

About a month I am going to begin the desensitization. It´s weird to say but I am very happy that the test was positive.

[afghan666]

We don't "know" there's a neurotransmitter deficiency. Testing is highly inaccurate. Some evidence, please.

 It has been tested by scientists that low levels pf dopamine causes depression,loss of focus,Adhd and parkinson disease.After an O ,our body is depleted of dopamine which also results in high prolactin levels.prolactin is a sex and dopamine inhibiting hormone....after an O the body signals the release of prolactin as the natural process of mating is job done.But in pois sufferer the prolactin is released in far greater amounts thus it affects our focus,causes depression,ADHD,etc.the abnormal release might be an organ insuffiency e.g kidney,liver,thyroid or adrenal gland.

 For more evidence please google out ''effects of low levels of dopamine''...i m using android handy...other wise i wud had sent the links....


Am trying to put a piece in the puzzle...it might be one secondary or may be tertiary effects in the pois complex....

 Daveman is right...i agree...

[CertainlyPOIS]

Hello evryone,
   A thought came to my mind.we have guys in forum who react badly to alcohol.my face goes pale if i smoke cigarettes.we might be having a sensitive or weak LIVER.the liver is responsible for producing antibodies,amino acids,hormones,blood,affects balancing sodium and neurotransmitters.it controls cholestrol,etc.
  there must be a relation between pois,allergy,neurotransmitter imbalance and liver.
 Fenugreek has liver protective properties.
 Turmeric is a gud liver protectant.i ll be checking out herbs used for hormone balancing and herbs good for live
 By the way fenugreek+ginseng+sulbutiamine+gingko biloba+optimen tabs hav an enormous improvement in pois and i am O ing daily.the only thing am concerned is whether fenugreek's effect will last or if i might build up some sort of tolerance.

if you are in the US and you figure out what test you need to check out your liver you can go through this website to do you your test without doctors apointment, they use labcorp..http://www.prepaidlab.com/ i have been using them for almost 2 years and using them as i try to increase my vitamin d.


there is way to check out your neurotransmitter but will be very difficult to find a place to do it since it is very new.

[CertainlyPOIS]

Today I did the skin pr.ick test. The result was positive. There was a big red spot on my arm. Yesterday I used Xyzal. I wasn't allowed to use antihistamines four days before the test. I didn´t knew that. The red spot could be bigger if I didn´t use Xyzal. But that's not for sure.

About a month I am going to begin the desensitization. It´s weird to say but I am very happy that the test was positive.

Nice What type of test did you do.
intradermal,of just basic one.
I just wanna say i hate those of you in europe with all the love  of my heart. 

[Vandemolen3]

It was a basic test. The needle didn't hurt at all.

[horizon]

forum skinprick test count so far:
positive= 1, negative= 2

Van, did Dr.W do the test?
how long after ejaculation did you do the test?

[carlitto]

Today I did the skin pr.ick test. The result was positive. There was a big red spot on my arm. Yesterday I used Xyzal. I wasn't allowed to use antihistamines four days before the test. I didn´t knew that. The red spot could be bigger if I didn´t use Xyzal. But that's not for sure.

About a month I am going to begin the desensitization. It´s weird to say but I am very happy that the test was positive.

Great news Van! how big was the quantity of fluid injected? just one drop or more? at what dilution ratio? and finally did you store the semen sample in your fridge or did you give it to the doctor right away?
I am interested in doing this hyposensitization too but I cannot go to the Hague every 2 weeks

[demografx]

We don't "know" there's a neurotransmitter deficiency. Testing is highly inaccurate. Some evidence, please.

 It has been tested by scientists that low levels pf dopamine causes depression,loss of focus,Adhd and parkinson disease.After an O ,our body is depleted of dopamine which also results in high prolactin levels.prolactin is a sex and dopamine inhibiting hormone....after an O the body signals the release of prolactin as the natural process of mating is job done.But in pois sufferer the prolactin is released in far greater amounts thus it affects our focus,causes depression,ADHD,etc.the abnormal release might be an organ insuffiency e.g kidney,liver,thyroid or adrenal gland.

 For more evidence please google out ''effects of low levels of dopamine''...i m using android handy...other wise i wud had sent the links....


Am trying to put a piece in the puzzle...it might be one secondary or may be tertiary effects in the pois complex....

 Daveman is right...i agree...

Interesting, but purely speculative. Cite studies.

The inaccuracy of neurotransmitter testing is what you quoted me above. I would love to know that you found a way to test accurately.