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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6429221 times)

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!
 

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 »
 

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!!
 

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.
 

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.
 

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!
 

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.
 

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.
 

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
 

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.
 

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. :)
 

Offline demografx

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

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.
 

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.
 

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.
 

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.

 

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!!
 

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 »
 

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!
 

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 »
 

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?
 

Offline demografx

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« Reply #13596 on: 10/06/2011 22:31:13 »

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

Offline daveman

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« 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).

 

Offline daveman

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« 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.

 

Offline Counterpoints

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« 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.


 

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