[Porke]

I would also point out that (still assuming a normal distribution) my percentile for zinc RBC was 6%. This is high enough for the Dr to tell my that my zinc levels are fine, but if you think about it for a minute this is a catastrophe. A yound athletic male in his 20s having less zinc than 94% of the population used by the lab to make the normal range.

Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.

[John21 (OP)]

John, I forgot, does milk still affect you?

I don't know, I don't drink it. The only milk product I eat is yogurt, and that doesn't seem to have any negative effect.

[daveman]

Looking_for_answers,

Sorry, I wasn't here when you were here before. How long does it take to get to your level of understanding of the system?

As you say, it must be very important to be able to evaluate what a doctor is telling you, you assume that he knows what he is talking about. I could take all of the tests in the world, and let them tell me what's wrong, but it seems that even they don't really know how to interpret things.

So it's even more difficult than I was thinking, to hire someone to tell us what tests to take, but finding someone to interpret them and provide a therapy even more difficult.

Pretty frustrating. We almost have to become our own doctors. Sigh!

[Looking_for_answer]

low pregnenolone can cause a lot of cognition problems, immune responses, fatigue, etc.

Yes, that's what I think but not tested yet.

Have you some articles about pregnenolone and immune system?

There is a lot of anecdotal evidence of preg improving the immune system in those who are deficient. It's like all other natural compounds, if you dont start with a deficiency in preg you shouldnt expect to get better with preg. This is something that limits a lot the research in these compounds, because the number of people who actually start with a deficiency in the compound being low implies the success rate will be low. But of course for the minority for started with a deficiency and cured it, the results are astonishing. Researchers perfer to find chemicals that act for a large percentage of the population, with a total disregard of what is causing the symptoms. Another problem with preg and other naturally occuring compound is that its not patentable, so research fund is scarse. Still I've come across studies about preg to cure rheumatoid arthritis and lupus.

i think preg deficiency has a lot of common symptoms with POIS. And the fact that my preg was so outrageously low 18-20h after my porn rant tells me that my orgasms are giving a beating to my preg status. That morning it took me a while to remember my phone number when asked at the Dr's office. 

[Looking_for_answer]

I would also point out that (still assuming a normal distribution) my percentile for zinc RBC was 6%. This is high enough for the Dr to tell my that my zinc levels are fine, but if you think about it for a minute this is a catastrophe. A yound athletic male in his 20s having less zinc than 94% of the population used by the lab to make the normal range.

Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.

With that regard, I find doctors so dumb. I suppose they are just protecting themself against malpractice or quackery labels, but c'mon when you see a big dude coming in with a test of 300 u know something is wrong, I dont care that the ~2.5 percentile of the population happens to be at 200 or whatever the treshold they had set.

[Looking_for_answer]

Looking_for_answers,

Sorry, I wasn't here when you were here before. How long does it take to get to your level of understanding of the system?

As you say, it must be very important to be able to evaluate what a doctor is telling you, you assume that he knows what he is talking about. I could take all of the tests in the world, and let them tell me what's wrong, but it seems that even they don't really know how to interpret things.

So it's even more difficult than I was thinking, to hire someone to tell us what tests to take, but finding someone to interpret them and provide a therapy even more difficult.

Pretty frustrating. We almost have to become our own doctors. Sigh!

You're right, you have to be your own doctor. It's very counter productive but if your symtpoms arent fixed by statins, anti inflamatories, viagra or an anti depressant, then your on your own. I see my doctor as someone who can order the tests that I want, and hopefully write me a prescription if I decide that I  want to try a med. Dont expect yout doctor to tell you the tests that you need nor to interpret the results carefully. Because their guidelines are written (or at least heavily influenced) by big pharma, so the tests that they will give you will only be geared toward what big pharma has to offer in the market right now. If the solution of your problem reside with non patentable compounds, you'll never find out about it unless you dig yourself. 

[Looking_for_answer]

If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

 

[Looking_for_answer]

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 

[demografx]

Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.

Hi, Porke, I certainly agree with your "barely normal is not OPTIMAL" conclusion, but please allow me to disagree with the FIRST part of your post - about doctors not willing to admit to a problem.

When I was tested "normal" a few years back, I screamed and shouted to my GP and my urologist about needing testosterone for POIS. (I quoted 2 specialists, Dr Waldinger and a Czech sex researcher). It worked (they probably just wanted to get rid of me, finally  []), and they gave me T-injections with monitoring. They did put me through hoops trying to discourage me (I had to buy the stuff myself, running back and forth to the MD's and arranging shots with the GP's nurse), but I still got my way.

I'm now on patches and they work very well for my POIS. For that, I was tested in a much more sophisticated lab and with a highly regarded endocrinologist who is sympathetic to POIS.

[demografx]

Looking_for_answers,

Sorry, I wasn't here when you were here before. How long does it take to get to your level of understanding of the system?

As you say, it must be very important to be able to evaluate what a doctor is telling you, you assume that he knows what he is talking about. I could take all of the tests in the world, and let them tell me what's wrong, but it seems that even they don't really know how to interpret things.

So it's even more difficult than I was thinking, to hire someone to tell us what tests to take, but finding someone to interpret them and provide a therapy even more difficult.

Pretty frustrating. We almost have to become our own doctors. Sigh!

You're right, you have to be your own doctor. It's very counter productive but if your symtpoms arent fixed by statins, anti inflamatories, viagra or an anti depressant, then your on your own. I see my doctor as someone who can order the tests that I want, and hopefully write me a prescription if I decide that I  want to try a med. Dont expect yout doctor to tell you the tests that you need nor to interpret the results carefully. Because their guidelines are written (or at least heavily influenced) by big pharma, so the tests that they will give you will only be geared toward what big pharma has to offer in the market right now. If the solution of your problem reside with non patentable compounds, you'll never find out about it unless you dig yourself. 

I agree! We must take the lead with our doctors and treat them as our assistants! Hopefully, the experiences written here will help anyone reading this to better manage YOUR medical professionals!

[demografx]

omerbasket, 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: 3 years' worth of posts (over 7,000 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
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" 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]

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 

Looking_for, thank you! Who would we go to for mineral testing?

[daveman]

If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?

[Looking_for_answer]

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 

Looking_for, thank you! Who would we go to for mineral testing?

I did mine with the lab Quest Diagnostics but I read Spectracells Lab might be better for minerals. If you just want plasma levels I think this is fairly standard in any lab. RBC levels probably also not a big difference. I think some more sophisticated labs use loading methods or other dynamic testing. For example you load magnesium one morning and collect urine for 24h. that tells you how much your body wants it. I have only try a loading test for iodine so far.

Btw labs wont give you the percentile. For those whose math ir rusty, you let mu = (lower bound of the normal range + upper bound of normal range)/2. Then sigma = (upper bound - lower bound )/4. Then let z= (your personal concentration - mu) / sigma. This is your z-score. You can find the probability P(Z<z) in any normal distribution table. Be careful with signs, with a z<0 you have to do a little "reflection" to get the probability from the table.

This of course assumes that the concentration are normally distributed. For something like TSH (the thyroid stimulating hormone) you would probably expect a fat tailed on the right, not normally distributed. But for minerals i think this is a good assumption.

[Looking_for_answer]

If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?

hola senor,

yes i think that would be a good plan. say 2 weeks of abstinence, then first test, then few orgasm, then 2nd test as soon as possible after. then 3rd 2-4 days. If we were part of an official study they would probably make us masturbate and take blood samples every 10 minutes to see the precise response that we have to orgasms, to compare it others in the population. But that probably wont happen. But these 3 test plus writing down your observation about your mental status (euphoric, down, clever, confused, tired, etc) should give a lot of info. For example if many others have a pregnenolone that plummets to almost zero, like it happened to me, then we could start thinking about at least why this happens or how we can fix it.

[prism]

Im sure there's lots that would study orgasms of pois sufferer

this guy currently (dec 09) is doing something with orgasms for example http://psychology.rutgers.edu/~brk/
http://www.dintz.com/scientists-study-mental-orgasms-through-mris/

[GoingCrazy]

goingcrazy, congrats on the 5 weeks!

That's really longtime for you isn't it?

Yes thank you it was my longest so far.

Right now, day 2, I am Perfect...No bad mood and no brain fog.  The only thing I have changed was not touch my man part all day, and I slept in a different room last night.  I also ate sugar, french vanilla tea and experience no sensitivities.

I noticed that when I am POIS, I am unusually mad at everything and take everything personally.

I also agree about this hormone/prolactin/dopamine issue.  In the center of my head after "O", I notice a terrible feeling that comes on.  This is eventually relieved by spurts of "good feeling" chemicals that eventually balance the mood chemicals in my head. This all takes place over about a day for me. 

[demografx]

Im sure there's lots that would study orgasms of pois sufferer

Sure, there are many. But they need funding.

this guy currently (dec 09) is doing something with orgasms for example
http://psychology.rutgers.edu/~brk/

http://www.dintz.com/scientists-study-mental-orgasms-through-mris/

I'll write to him and ask.

In 2009, I wrote to Beyer-Flores, his co-author of "Science of Orgasm" (no reply).

Nice find, daveyboy! (I just saw in your 2nd link above: "Dr. Komisaruk has just been offered a grant to study the male orgasm." Wow! Too good to be true. Now let us all scientifically...............cross our fingers []

[demografx]

Here's the email I sent just now, largely authored by Counterpoints and with assistance from Martin88:

Subject: Seeking help through research for a serious orgasmic-medical condition

In a message dated 3/28/2010 8:56:55 P.M. Pacific Daylight Time, [demografx] writes:

Dear Dr. Komisaruk,

                    Re: Postorgasmic Illness Syndrome (POIS)

We are asking for your precious help concerning a serious new medical condition (described below). The smallest suggestion, idea, opinion or ideally a proposition from you to initiate some research, would be very welcome and appreciated. We already have a group of sufferers who would be willing to participate in a study.

The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. Dave Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Postorgasmic Illness Syndrome" (POIS). His study is attached.

Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for many days. The symptoms include severe fatigue/exhaustion, anxiety, severe cognitive impairment, word finding difficulty, and irritability, but there are also other notable symptoms.   Some with this condition have reported increased cortisol levels (e.g. over 200% of the upper reference for 24 hr urine cortisol).  Others have increased prolactin (over 400% of the upper reference), increased ACTH, or decreased testosterone.  Pituitary abnormalities have been found in those who have had pituitary MRI scans.  One sufferer was found to have adrenocortical carcinoma.  Over 97% of the reported cases have been from men.

Quite alarmingly, the number of reported cases is increasing at a rapidly increasing rate.  Presently, about 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administrated by a Cambridge medic.  Other cases are being increasingly described by the ISSM (International Society for Sexual Medicine).

Please consider this carefully.  A helpful response could save many lives.  If you have any questions, or need more information, please ask.  Several prominent scientists with reputable university affiliations feel that this condition is in urgent need of research attention.


Best regards,
"demografx"
Moderator
POIS Forum  (representing 300 POIS cases reported, and over 600,000 + page views (visitors)
http://www.thenakedscientists.com/forum/index.php?topic=6576.0

POIS website:
http://sites.google.com/site/POISwebsite/

attached: Dr Waldinger's 2002 Research Study PDF

(Also sent a 2nd email to Dr Komisaruk, with our wikipedia entry and my cellphone number, plus all the resources from our newcomer-Welcome letter).

[Looking_for_answer]

Several sentences (including the title) sound awkward to me but English isnt my first language so maybe I'm wrong. The last paragraph sounds exaggerated, unless I missed a lot of action. I'm a researcher myself (in science, but not medical field), and I can tell you that the general feeling is that when you see an exaggeration you immediately start to wonder if any information you just read is reliable.

Also we have to understand that studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc. I know it would be tremendously cool to have an high tech analysis of what goes on and what is happening different for us. But if we go that route, it will take years before we can get something out of it. This is not going to be a priority for governmental funds, and private research wont tell you much until perhaps they come up with a pill and start running trials. I'm gonna try to find whats wrong with me without waiting for that. but still I should say thanks for sending the email, the more we raise awareness the more likely at some point research starts for it. We could end up on an endocrinologist who likes the idea and want to investigate more about it. Its good to have a plan B, if my plan A fails.