[demografx]

Solution, I had a hernia as a youngster, do you think that can be related to POIS?

[demografx]

Demographx has you and doctor discuss other possible factors to your pois other than low testertorone.

CC, no we haven't. But something else is certainly needed! Thank you for the reminder, I think I will email him now!

[demografx]

New tests results:
From the same batch I have made few weeks ago :
(POIS day 3, early in the morning, blood test in hospital)
ACTH 16.0 (2.0-11.0) pmol/L ,  I was surprised by this one, I don't know how to interpret this result..
Cortisol : 533 (138-690)nmol/L  

(POIS day 3, 24h urine test in hospital)
Creatinine 17.3  (7.1-15.9) MMOL/D
Cortisol, I'll report.

Martin, ACTH does seem surprising. I wonder if this ties in to Counterpoints' speculation about repeated pituitary connections that we've seen here with POIS? (e.g., my endo odered an MRI of my pituitary after seeing my hormone test results).

You've probably seen NIH explanations of high ACTH.

[Karen W.]

Demo,

 This is a huge step in the right direction..

 Congratulations and I wish you all good luck and well wishes, that this will open the doors that need to be opened to get this problem attended to in a timely manner, so that all concerned can know there is hope and answers to so many questions!

None of you are alone there are many of you suffering and thus you all together make a very strong resource! There is strength in numbers and that old saying is certainly true in cases like this where you need to support each other and stand together in one voice to begin to be heard and to get some real help!

Congratulations to you all!

Karen,

Many thanks! I do hope we can "grow" into an advocacy group as NORD and others suggest. And with well-wishers like you it sure makes this lonely road just a little easier! Thanks again.

Your welcome Demo.. I had somehow missed that post and it was wonderful to see you have some alternative support .... support that may well help propel these cries for help to the right ears and prove to be beneficial to all of you members here who are so in need of a cure for this very debilitating problem.. Good luck to you all!
Hey demo.. may I ask if anyone has offered up a whole blood and physical work up while feeling well and then had a doctor run another full workup immediately after sex and the following days to watch the physical and chemical changes that begin occurring after relations..etc?
Is that a possibility?

[demografx]

Karen, that is exactly one of our goals. We have done that to a small degree and so far haven't seen great consistency amongst the results. But some people have tested out-of-POIS only (like me) and in-POIS only because we are still working to reach consensus on the best way. Different labs, different procedures, different hormones tested, etc. But my own personal testing, even with just the one-sided results showed low testosterone, and since being on replacement therapy, that has proved to be a 75% cure for me. But I am now very greedy and want the other 25%! Maybe testing again "Day Zero", as you suggest, might reveal more.

I would love to see us do a complete fMRI, mapping brain areas, during the changes!

Not something a standard lab could order up!

I think that one of our members said that it could be done for about $300 per person, but s/he would need to connect with a good source, and then of course people would have to fly roundtrip to a location where the facility is.

Maybe the thing to do is to start with one person.

Anyway, Karen, you are exactly on target.

And did I tell you that 3 wonderful thread/forum members stepped up, unsolicited, and out of the blue volunteered $2,500 to our research? Very inspiring, to say the least!

An afterthought: our testing has been limited to hormones, no other workup that we've been striving for universally. That seems to be the consensus as to where the "culprit" lies. (And boy, does he lie [])

[CertainlyPOIS]

I know chronic fatigue is not pois but the symptoms are to similar to ignore it. so........
I read book on chronic fatigue syndrome and it suggested this supplement including changing diet. does anyone have any ideas about this supplements. I have already started looking them up.

pycnogenol - antioxidant
acercola - purest vitamin c
coq10- mitochondria
evening primrose oil - gamma linolenic acid
bovine colostrum
oil of oregano - yeast infections.


The book really talks about the immune system needing to be rejuvinated because when that is affected it affects other parts of the body including major organs.  it also talks about improving digestive system to rid body of antioxidants which supposedly add alot to cfc symptom

[CertainlyPOIS]

On mapping brain.
i will like to know about blow flow to different parts of brain, and info on brain waves.

[Pois_is_hell]

Hi, first post. Im 22 years old i have intense brain fog,Anxiety,no energy and depression after orgasm. It lasts days to weeks at a time and has pretty much ruined my life. Ive went to doctor after doctor and nothing. Everything has go so hard due to this. Is there any treatments that are known to work or help? Also is there any hope for the future.   

[demografx]

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




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

Our new POIS Information Website 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:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address and I'll send you back the PDF.

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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: 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 for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 350,000 page visits. Not bad for a rare malady!

[demografx]

Pois_is_hell, this post might 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: over 2 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx POIS site:http://www.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#.

[martin88]

Martin, is your overall red meat consumption high? That's what my endo referred to, not just the days before the test.

You're right Demo, I'm eating too much red meat. In fact some type of white meats are considered like red meat.

martin 88 i am getting my blood test back hopefully this tuesday and i also tested acth hopefully there is a corelation here.

I was happy at first to see my result, but I can't wish you the same. I was stressed (maybe 20% of the max I can reach) during the test because of POIS/Social anxiety, so maybe acth is only a symptom, not the cause. Maybe this will open the door for a pituitary scan.

[martin88]

You've probably seen NIH explanations of high ACTH.

I just did, thanks. I'll see with endo!

[Defsync]

Friday we have off from work, and that's when I will be going into the Toledo Medical University Library. I just got off the phone with the on call librarian, and apparently the university subscribes to just about any online medical publication that's available. I know in my internet research I've often come up against "you need to pay $30+ to read this article" and it looks like I'll be able to read any of them for free.

So, my reason for stating all of this is, if anyone wants a copy of a POIS related medical article that normally costs money to access, let me know with a link to said article in a private message by Thursday evening.

I will also have a research assistant at my disposal. Is there anything POIS specific I should ask for? I'm thinking, any work on the mechanics of an orgasm, neurological and endocrinological aspects of orgasm, rare orgasm dysfunctions/disorders, etc.

[demografx]

I asked my endo how to improve my 75% POIS cure. He said to test Estradiol and other hormones.

[demografx]

Martin, thanks re creatinine, I didn't know that some white meat should also be considered to eliminate. Can you say which ones?

[CertainlyPOIS]

finally got test back
doctor was ****** about it
said i shouldnot worry about high ACTH because cortisol is not low.
DID TEST AT AROUND 1-30PM IT WAS ORDERED 1;25PM     
results                              ref
cortiosl 14                       AM 4-22 UG/DL      PM  3-17 UG/DL
FREE T3  4.0                         2.3 -4.2 PG/ML 
FREE T4  1.45                        .71-1.85 NG/DL
TSH     1.523                        .35 - 5.50 uIU/ml
FSH     .8                           1 - 12 miu/ml
lh      4.3                          2-12    miu/ml 19- 50
prolactin 8.4                        3-20 ng/ml
ACTH    60.0                    am 9 - 52  pm  4-35 pg/ml
thyroid peroxidase antibody <10      0 -35  Iu/ml

        Testosterone i have two different results, dont know why

first 
F test    111   47 -244 pg/ml
% F test   2.5   1.6- 2.9
total test 446   280 - 1070 ng/dl
shbg   23         13 -71 nmol/l
dhea   15.0     dont know range         

other testorone


testosterone 431   400 - 1080 ng/dl
shbg 27   11 -80 nmol/l
testosterone  bioavailable   249.5   130.0  - 680.0 
testosterone, free  87.76   47.0 - 244.0 pg/ml
estrone 21.8               9-36 pg/ml

[CertainlyPOIS]

I took blood test after about 8 times.  I did one the night before but didnt really feel full fatigue until next day after test which was two days after last time.


martin 88

what do you mean stressed 20% of max, does that mean pois has not kicked in 100%

what is NIH reason for high ACTH

[demografx]

Defsync, you might also consider following some links from the words of the book title and its authors, "The Science Of Orgasm", Barry R. Komisaruk, Carlos Beyer-Flores, Beverly Whipple. I wrote to Beyer-Flores, no response. Maybe we should re-approach, with a "how-much" question? []

btw, I don't know if you got my PM a few weeks back, about coordinating the outreach letters.

[demografx]

CC, I couldn't find the link I saw about ACTH. I was toying with ACTH and NIH on google when I ran across it. Martin can probably find it though.

[martin88]

I didn't know that some white meat should also be considered to eliminate. Can you say which ones?

Demo, there are differents opinions on the web about which meat is red or white, there is an article here: http://en.wikipedia.org/wiki/Red_meat
I think all that is not chicken should be considered red meat. I eat all except beef. It would be interesting to find why red meat is causing higher creatinine level (creatinine or creatine content of meat?).

martin 88
what do you mean stressed 20% of max, does that mean pois has not kicked in 100%
what is NIH reason for high ACTH

Confucius,
My POIS was 100% when I did the test. Brain fog, fatigue were 100%. Social anxiety was 20% because the test wasn't very stressful, other social situations are more stressful than this one. So I suppose ACTH can even be higher during a more stressful situation.
NIH link:
http://www.nlm.nih.gov/medlineplus/ency/article/003695.htm#What%20abnormal%20results%20mean

I asked my endo how to improve my 75% POIS cure. He said to test Estradiol and other hormones.

I often heard about people who are taking aromatase inhibitors with Testosterone.

Maybe aldosterone (link with sodium/potassium) should be tested (?)
ACTH has a little effect on aldosterone...