Post Orgasmic Illness Syndrome (POIS)

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Offline Green

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« Reply #13550 on: 06/06/2011 19:23:53 »
I would be happy to donate $100 to begin with once the internation donation page is up.

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Offline demografx

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« Reply #13551 on: 06/06/2011 20:02:55 »

I would be happy to donate $100 to begin with once the international donation page is up.


Green, thank you!!
« Last Edit: 07/06/2011 04:59:30 by demografx »

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Offline demografx

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« Reply #13552 on: 06/06/2011 20:48:53 »




For those of you interested in and following my TRT (testosterone replacement therapy) POIS treatment (I'm 80% POIS-free now, steadily, for 2 and 1/2 years after full hormonal bloodtesting, diagnosis, treatment and follow-up by my endocrinologist. My treatment consists of 15mg daily dosage of (3) Androderm testosterone patches.


My test results from May 25, 2011:


Testosterone, Free/Total Equilib          Result          Units          Reference Interval


Testosterone, Serum                        376             ng/dL            193 - 740

Testosterone, Free                        15.57            ng/dL           5.00 - 21.00

% Free Testosterone                        4.14              %             1.50  -  4.20           
« Last Edit: 07/06/2011 04:52:45 by demografx »

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Offline demografx

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« Reply #13553 on: 06/06/2011 21:00:58 »



I will try in about a few days at the post office [to send in a NORD-POIS donation]. Thanks.


Vandemolen, thank you!!



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Offline daveman

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« Reply #13554 on: 06/06/2011 22:06:13 »
Demo,

A new member on SMF indicated that he took testosterone, his quote:

"About 5 years ago i had my testosteron tested, which was low at 6.8 (ref 9-38). After a year of taking andriol (testosterone, 40mg) the level even dropped to 3.8.
When i stopped taking Andriol testosteron went up to 13. "

What do you think is going on there?

Would it be stopping his production thereby overall reducing his levels, even though he is taking it?

How does Murphey do it??

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Offline demografx

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« Reply #13555 on: 06/06/2011 22:14:00 »
Daveman,

About the poster's Andriol. From wikipedia:
http://en.wikipedia.org/wiki/Testosterone_undecanoate


"Experience from [Andriol] users indicates that in doses of less than 240 mg per day, effects are negligible, except at the very onset of use, while even in higher doses, effects are still minimal. It is therefore thought that most of the steroid is somehow not making it into the blood stream."

« Last Edit: 06/06/2011 22:52:36 by demografx »

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Offline Counterpoints

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« Reply #13556 on: 06/06/2011 22:16:16 »
Ladies and Gentlemen,
...

Pharaoh...  I think your low testosterone could be caused by a pituitary adenoma.  I recently read a case similar to yours, where this was the cause.  Please see if you can get a contrast enhanced pituitary MRI (assuming your kidney function is good).  Have you ever had trouble with managing your weight?  This could be relevant.

I am more and more starting to think pituitary adenomas/abnormalities may be the root cause of POIS in many cases.  They can affect cortisol, testosterone, sexual function....


Hi Counterpoints,

I've actually considered that possibility.  My uncle suffered from a pituitary disorder, resulting in a growth deficiency and micropenis.  My mother, her two sisters, and their mother all suffered from hypothyroidism requiring surgery.  I agree with you that pituitary abnormalities maybe the root cause, as not only does it affect cortisol, testosterone, and sexual function as you correctly stated, but also dopamine.  According to wikipedia, one treatment option for pituitary adenoma is the use of dopamine agonists.  Furthermore, the symptoms of low dopamine are identical to what we experience with POIS: Depression, ADHD, Social Anxiety, and Anhedonia.  Thanks for recommending this test.  I'm going to try to have one ASAP. 

You may need your GP to refer you to an endocrinologist who specialises in pituitary disorders, particularly Cushing's.  You may have cyclical Cushings (and the adenoma may also be causing POIS).

I recommend getting AM cortisol, PM cortisol, Testosterone, Free Testosterone, LH, FSH, IGF-1, and Prolactin blood tests.

A pituitary MRI (with contrast) will show whether you have a pituitary adenoma.  For the contrast, you will need to have good kidney function though.

For case studies, you may be interested in googling case studies of cushings.  I will PM you the particular one I saw.

PS.  Keep in mind this is just an idea... it is speculative.  Always fully consider the risks of anything (e.g. contrast enhanced MRI) before making a decision.  MRI is a safe imaging modality (as far as we know), and the gadolinium contrast is presumed to be relatively safe if you do not have kidney problems.  But best to consult with your doctor.
« Last Edit: 06/06/2011 22:36:21 by Counterpoints »

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Offline Counterpoints

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« Reply #13557 on: 06/06/2011 22:21:28 »
Pharaoh:  For some reason I cannot PM you.  If you PM me your e-mail address I will respond to your other questions by e-mail.


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Offline demografx

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« Reply #13558 on: 07/06/2011 04:30:28 »

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Offline demografx

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« Reply #13559 on: 07/06/2011 04:47:57 »





Just sent my first $100 to the fund. I intend to add at least $900 more to equal my original pledge of $1000 if it looks like we can get enough participation.




EDS, thank you!!


« Last Edit: 07/06/2011 04:50:04 by demografx »

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Offline demografx

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« Reply #13560 on: 07/06/2011 04:49:07 »


Come on everyone! Let's get this [NORD] thing cranked up and beat this ghastly thing we call POIS!!

http://rarediseases.org/about/support/research-donations/fg_base_view_p3



EDS, thank you for that!



« Last Edit: 07/06/2011 05:24:25 by demografx »

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Offline Starsky

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« Reply #13561 on: 07/06/2011 16:37:13 »
All i want to say is that curcuma 1tsp- black pepper 1/2tsp dont do nothing. POIS as i had before.


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Offline demografx

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« Reply #13563 on: 07/06/2011 19:46:45 »


Research Fund Total: $550







« Last Edit: 07/06/2011 20:05:32 by demografx »

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Offline demografx

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« Reply #13564 on: 07/06/2011 20:04:26 »

Where can I donate to The POIS Research Fund online?

Please donate here:
http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3

Thank you!!!





« Last Edit: 07/06/2011 20:46:20 by demografx »

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Offline Vandemolen3

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« Reply #13565 on: 07/06/2011 23:06:07 »
Google Translate:

Pill for men a step closer

Updated: June 5, 2011 10:06 p.m. info.


LONDON - After many years research on contraceptive pills for men - with little success, due to hormonal side effects. The new pill works as an "anti-vitamin 'and let the libido alone.

Temporarily disable the fertility in men is somewhat more difficult than in women. Instead of one ovulation per month, men produce millions of sperm cells per day to avoid.

For hormonal contraceptives this works only with relatively high doses - which may again be associated with side effects such as decreased libido.

A group of American researchers therefore decided to find another route to the so-called "spermatogenesis" temporarily interrupt.

Synthetic vitamin deficiency
Earlier research had already known that the production of sperm cells in humans and animals can end with severe vitamin A deficiency. Now is such a shortage in the western world not only very rare, it is also undesirable, because vitamin A is important for many other body functions, such as night vision.

But the vitamin appears in testes do its work through a specific receptor - a type of antenna that gives a signal as soon as vitamin A stick. And this receptor seems to play no significant role in other functions of the vitamin.

No sperm
The new pill therefore contains a substance chemically similar to the vitamin, but not the same effect. The vitamin receptor is occupied by this substance, and the production of sperm stops.

The results were published in the journal Endocrinology. According to the researchers, a low dosage already effective to prevent pregnancy. They found no adverse short term and will now see if the male pill, even after several years use poses no health risks.

Source:
http://www.nu.nl/wetenschap/2532777/pil-mannen-stap-dichterbij.html

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Offline Willem

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« Reply #13566 on: 07/06/2011 23:24:00 »
Google Translate:

Pill for men a step closer

Source:
http://www.nu.nl/wetenschap/2532777/pil-mannen-stap-dichterbij.html

Fascinating!  Thanks for sharing Van!

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Offline demografx

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« Reply #13567 on: 08/06/2011 05:18:58 »
Van, very interesting!!

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Offline demografx

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« Reply #13568 on: 08/06/2011 05:47:04 »




BIG THANKS to rock27 for extracting all emails from our POIS Survey Database. These names will be added to Martin88's work in progress of extracting usernames from this forum.

All names will be mailed a plea to donate to our NORD-POIS Research Fund!

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Offline demografx

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« Reply #13569 on: 08/06/2011 15:18:27 »




BIG THANKS to Martin88 for completing the extraction of 325 usernames from this forum today!

All names will be mailed a plea to donate to our NORD-POIS Research Fund!


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Offline Omen 30

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« Reply #13570 on: 08/06/2011 16:41:16 »
after suffering for so many years i never knew about pois but now when i am 30 i know i have it and the only thing that helps is not to have an O.

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Offline Habibou

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« Reply #13571 on: 08/06/2011 17:31:57 »
Great Van for this link !

It is from UTRECHT, same city as Prof Waldinger??? I think so, perhaps it would be great to make a link between this and POIS sperm allergy for some trials.

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Offline CertainlyPOIS

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« Reply #13572 on: 08/06/2011 18:44:39 »
NICE ROCK27 AND MARTIN 88.

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Offline rock27

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« Reply #13573 on: 08/06/2011 19:54:50 »
Great Van for this link !

It is from UTRECHT, same city as Prof Waldinger??? I think so, perhaps it would be great to make a link between this and POIS sperm allergy for some trials.

The researchers that study the birth control pill for men, are from New York. They tested it on mice and are now ready for trials on humans? Any volunteers?

Link to the original articles:
http://www.bitsofscience.org/birth-control-pill-men-1571/#more-1571
http://endo.endojournals.org/content/152/6/2492

Address all correspondence and requests for reprints to (she is also a co-author of the article): Debra J. Wolgemuth, Columbia University Medical Center, Russ Berrie Pavilion, Room 608, 1150 Saint Nicholas Avenue, New York, New York 10032. E-mail: djw3@columbia.edu.
« Last Edit: 08/06/2011 20:52:10 by rock27 »
POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.

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Offline Vandemolen3

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« Reply #13574 on: 08/06/2011 20:31:07 »
I m. for a few hours (my plan was to have arousal but nog O.). Not so smart. Look what happened: I had a rash on the hand which touched the sperm. For me this is another prove that in my case it's about allergies. Of course maybe there are other causes too.

http://imageshack.us/photo/my-images/148/img2506u.jpg

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Offline rock27

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« Reply #13575 on: 08/06/2011 20:46:52 »
@Van:
What part of the hand is that? I can't see a hand in the image. Is it the pulse (back side)??
It looks very red!
POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.

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Offline martin88

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« Reply #13576 on: 08/06/2011 23:39:21 »
You're welcome Demo, CC. Thanks to the people who will send the emails and PMs!!
I'm waiting for the NORD page for international donation to give money and hope the participation will be huge.
« Last Edit: 08/06/2011 23:40:53 by martin88 »

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Offline demografx

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« Reply #13577 on: 09/06/2011 00:28:22 »

I'm waiting for the NORD page for international donation to give money...


Martin, thank you!!

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Offline CertainlyPOIS

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« Reply #13578 on: 09/06/2011 03:10:41 »
I m. for a few hours (my plan was to have arousal but nog O.). Not so smart. Look what happened: I had a rash on the hand which touched the sperm. For me this is another prove that in my case it's about allergies. Of course maybe there are other causes too.

http://imageshack.us/photo/my-images/148/img2506u.jpg

is that new or is that something that used to happen, that is very intense.

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Offline dbfd588

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« Reply #13579 on: 09/06/2011 03:43:05 »
I went to my GP yesterday and he for the first time actually knew about POIS and had lots of info on it. He had read the Waldinger study. He agreed with me that all this is still in the research stage and he took lots of blood test, and I have to urinate in a Jug for 24 hours. He prescribed me Buproprion HCL (Wellbutrin). So guys, I will try it and report back. Luckily I was in day 2 of POIS when I had the blood drawn so I will report back on my results.

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Offline demografx

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« Reply #13580 on: 09/06/2011 05:58:16 »
dbfd588, thank you for reporting. Looking forward to seeing your results!

VERY encouraging to hear of a GP so enlightened about POIS!

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Offline Vandemolen3

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« Reply #13581 on: 09/06/2011 07:38:33 »
@Van:
What part of the hand is that? I can't see a hand in the image. Is it the pulse (back side)??
It looks very red!
Yes the pulse and the back hand. Yes very red. And this is a few hours after. Today my hand is still a bit red. Imagine what effect this has on the organs and the inner body.

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Offline Vandemolen3

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« Reply #13582 on: 09/06/2011 07:40:22 »
is that new or is that something that used to happen, that is very intense.
It's new for me. But it was also the first time that I m. for hours.

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Offline Habibou

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« Reply #13583 on: 09/06/2011 12:20:38 »
Great Van for this link !

It is from UTRECHT, same city as Prof Waldinger??? I think so, perhaps it would be great to make a link between this and POIS sperm allergy for some trials.

The researchers that study the birth control pill for men, are from New York. They tested it on mice and are now ready for trials on humans? Any volunteers?

Link to the original articles:
http://www.bitsofscience.org/birth-control-pill-men-1571/#more-1571
http://endo.endojournals.org/content/152/6/2492

Address all correspondence and requests for reprints to (she is also a co-author of the article): Debra J. Wolgemuth, Columbia University Medical Center, Russ Berrie Pavilion, Room 608, 1150 Saint Nicholas Avenue, New York, New York 10032. E-mail: djw3@columbia.edu.


you mean we can ask to get involved in the study ? :D

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Offline horizon

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« Reply #13584 on: 09/06/2011 12:32:56 »
you mean we can ask to get involved in the study ? :D

if you can, dont mention POIS.

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Offline daveman

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« Reply #13585 on: 09/06/2011 17:28:00 »
you mean we can ask to get involved in the study ? :D

if you can, dont mention POIS.

If they know you have POIS Im sure they will worry about this fact corrupting their test data.

Right! They believe us when it's something that could effect their data!!

Otherwise of course, it's in our heads. [:)]
How does Murphey do it??

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Offline demografx

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« Reply #13586 on: 09/06/2011 18:13:20 »
Sad but true!

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Offline lidridop

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« Reply #13587 on: 09/06/2011 19:31:05 »
Hi Guys, hope everyone is OK!

I haven't been here in a little bit, a lot of stuff going on lately, personally.

I have 2 things to post, the first being a question : is everyone moving over to the other major forum on POIS or shall we still post here? :)

And also, something major - My POIS has reduced to 2% of what it was - almost gone completely. I am CONVINCED that it has something to do with Vitamin D, the heat, circulation, at least for me. This is due to the change of season over here. I have not been taking any prescription drugs or otherwise and my diet and lifestyle are the same.

Of course I will still post here and lets all still work for a certain cause/solution for all of our symptoms.

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Offline rock27

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« Reply #13588 on: 09/06/2011 20:21:16 »
you mean we can ask to get involved in the study ? :D

Just reread it, and they have only done short term tests on mice. I think first they will perform long term tests on mice before humans. But when you're interested and live close just give a call :)

Anyway it is encouraging, that this is being developed. If boosting testosterone or desensitization is not curing you (enough), in the future this pill will be available.
POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.

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Offline rock27

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« Reply #13589 on: 09/06/2011 20:24:13 »

I'm waiting for the NORD page for international donation to give money...


Martin, thank you!!

Same for me. I will donate $ 1,000 when the International option is available on NORD.
POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.

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Offline daveman

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« Reply #13590 on: 09/06/2011 21:09:51 »
dan-ireland,

We're using both forums, you can post here, there or on both.

2%, Wow.

Good for you! Sound like good reasons too for the improvement.

How does Murphey do it??

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Offline demografx

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« Reply #13591 on: 09/06/2011 23:20:39 »

When the international credit card option is available on NORD, I will donate $ 1,000.


Rock, thank you!!

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Offline Habibou

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« Reply #13592 on: 10/06/2011 12:56:33 »
I created a topic called "Blood tests results" on the new forum = General Alternatives Causes and Treatment.
I suggest this part to be the one where we can post all our blood tests results since we have POIS.
We could check the fail common standards, compare and investigate more clearly.
As it is expensive, we can see which standards are the most important.

Thank you! [:)]


Mod Edit: Edited in the URL
« Last Edit: 10/06/2011 13:33:15 by daveman »

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Offline demografx

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« Reply #13593 on: 10/06/2011 20:53:21 »


NORD-POIS International Option


The research fund online donation site can now accept international donations.  NORD received two today (not POIS) -- one from London, the other from Australia.

Go to:  
http://rarediseases.org/about/support/research-donations

Write street address, city, and country in "Address 1"


Click the drop down for State, and the word International comes up -- click that.

The rest is self-explanatory.

THANK YOU, STEFANIE!

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Offline Limejuice

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« Reply #13594 on: 10/06/2011 21:23:44 »
Hi Everyone,

I'd like to share results from the seminal plasma hypersensativity test Dr. Bernstein preformed on my samples.  According to his tests, no IgE mediated reaction to PSA (the major seminal plasma allergen) was found - meaning the test was negative.  He provided test results in graph presentation form that displayed what a positive reaction looks like, what a negative control group reaction looks like, and what my reactions looked like.

This may come as a disappointment to many as it did me.  However, there were several outlier reactions, different than the major seminal plasma allergen that Dr. Bernstein tests for, that appeared in the graphs.  Dr. Bernstein noted them and attributed them to as an anomaly.  However, I feel these reactions indeed be the root cause we've been researching.

A different but related point.  I know that I'm allergic to gluten.  Everytime I eat it I get headaches, experience heat sensativities, brain fog and concentration difficulties, muscle weakness...  Last year I visted the allergist to be tested for gluten allergies.  She preformed a skin-***** test and concluded that the test results were negative because the reaction to gluten was only minor.

I feel that my outlier reactions in Dr. Bernstein's test results show that I'm hypersensative to something in semen (even if it's not the 'major seminal plasma allergen'). 

I plan on following up with these test results.
« Last Edit: 10/06/2011 21:26:45 by Limejuice »

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Offline Counterpoints

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« Reply #13595 on: 10/06/2011 22:27:44 »
Hi Everyone,

I'd like to share results from the seminal plasma hypersensativity test Dr. Bernstein preformed on my samples.  According to his tests, no IgE mediated reaction to PSA (the major seminal plasma allergen) was found - meaning the test was negative.  He provided test results in graph presentation form that displayed what a positive reaction looks like, what a negative control group reaction looks like, and what my reactions looked like.

This may come as a disappointment to many as it did me.  However, there were several outlier reactions, different than the major seminal plasma allergen that Dr. Bernstein tests for, that appeared in the graphs.  Dr. Bernstein noted them and attributed them to as an anomaly.  However, I feel these reactions indeed be the root cause we've been researching.

A different but related point.  I know that I'm allergic to gluten.  Everytime I eat it I get headaches, experience heat sensativities, brain fog and concentration difficulties, muscle weakness...  Last year I visted the allergist to be tested for gluten allergies.  She preformed a skin-***** test and concluded that the test results were negative because the reaction to gluten was only minor.

I feel that my outlier reactions in Dr. Bernstein's test results show that I'm hypersensative to something in semen (even if it's not the 'major seminal plasma allergen'). 

I plan on following up with these test results.

I get really annoyed by how when a test is normal (in regards to POIS), a physician acts as if this has conclusively proven that there is no reason for the symptoms.  And if a test is abnormal, then it is just explained away as insignificant.  What does it take to convince them that there is indeed a problem?

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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13596 on: 10/06/2011 22:31:13 »

Limejuice, thank you for sharing all your important work!!

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Offline daveman

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13597 on: 10/06/2011 22:51:39 »

Limejuice, thank you for sharing all your important work!!

Yes, great! I'm glad you saw something that "rang a bell". What are outlier reactions? Are there more details about those (expansions as to what they were etc).

How does Murphey do it??

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Offline daveman

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13598 on: 10/06/2011 22:57:02 »
I get really annoyed by how when a test is normal (in regards to POIS), a physician acts as if this has conclusively proven that there is no reason for the symptoms.  And if a test is abnormal, then it is just explained away as insignificant.  What does it take to convince them that there is indeed a problem?

Although it's not much of a consolation, Stefanie from NORD indicates that this is not just a problem with POIS. Almost ALL rare diseases get the same reaction. Unfortunately.

The ego and laziness of some of these guys actually kills people. And they get away with it.

How does Murphey do it??

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Offline Counterpoints

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13599 on: 10/06/2011 23:20:55 »
I get really annoyed by how when a test is normal (in regards to POIS), a physician acts as if this has conclusively proven that there is no reason for the symptoms.  And if a test is abnormal, then it is just explained away as insignificant.  What does it take to convince them that there is indeed a problem?

Although it's not much of a consolation, Stefanie from NORD indicates that this is not just a problem with POIS. Almost ALL rare diseases get the same reaction. Unfortunately.


I agree.  I have read tons of case stories for Cushings, and some people are dismissed for 40 years before getting treatment and a subsequent full recovery. 

In terms of the reaction, I think it is often ego, but sometimes it is mixed with insecurity.  Many physicians just don't have the guts or creativity to do anything non standard.  It is the few brave and scientifically minded physicians who discover rare diseases and invent protocols for their diagnosis and treatment.