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  4. Post Orgasmic Illness Syndrome (POIS)
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Post Orgasmic Illness Syndrome (POIS)

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Offline CertainlyPOIS

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13340 on: 26/05/2011 03:32:56 »
Quote from: demografx on 24/05/2011 15:08:40
Quote from: CCconfucius on 24/05/2011 03:22:11

vandemolen, if i was to come over to netherlands, how long is dr waldingers waiting list.


CC, he just wrote to me that he could see Green at the end of July.
I was asking for two years down line if i have to move just trying to gage how quickly i will see him.
« Last Edit: 26/05/2011 03:41:06 by CCconfucius »
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Offline Vandemolen3

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« Reply #13341 on: 26/05/2011 10:13:22 »
Quote from: CCconfucius on 26/05/2011 03:29:25
That last two sentence is confusing, those that mean he is looking at the sperm to see what is wrong.
It's a bad translation of Google. But you are right.
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Offline Habibou

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13342 on: 26/05/2011 11:39:28 »
Quote from: Vandemolen3 on 25/05/2011 23:55:00
Recent interview with Dr. Waldinger on an independent website of the university where he is a professor:

http://www.dub.uu.nl/content/sperma-allergie-gaat-de-wereld-over

Google Translate:
http://translate.google.nl/translate?u=http%3A%2F%2Fwww.dub.uu.nl%2Fcontent%2Fsperma-allergie-gaat-de-wereld-over&sl=nl&tl=en&hl=&ie=UTF-8

Quote
Meanwhile, Waldinger and colleagues of Immunopharmacology continue his research into the cause of POIS. "We are now at the molecular level to the sperm look. What is not good there? From studies in humans, we now have on basic research."

That's newswhorthy ! It would be great we are allowed to know where are the researches months by months...
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Offline rock27

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13343 on: 26/05/2011 15:16:39 »
Quote
Meanwhile, Waldinger and colleagues of Immunopharmacology continue his research into the cause of POIS. "We are now at the molecular level to the sperm look. What is not good there? From studies in humans, we now have on basic research."

Quote
That's newswhorthy ! It would be great we are allowed to know where are the researches months by months...

I got scared when I first read this.
But I think he is searching for the exact component of the sperm we are allergic to, so to to make the remedy easier. Good job he's gotten more researchers on his team!
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POIS, fatigue, brain fog, can't find words, irritated, can't concentrate.
 

Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13344 on: 26/05/2011 19:22:42 »
Quote from: Vincent Marcus on 25/05/2011 22:23:00

Demo, personally I think your remaining 20% is most likely caused by semen and if you eliminated semen production you would eliminate that 20%. However I base that mainly on Animus's successful surgery and his case is still only one case no matter how successful it was meaning there may be a possibility it won't work for everyone with POIS....
...
...
Perhaps this means fenugreek reduces POIS by reducing sperm production. Demo, did you say you tried fenugreek? If it didn't work for you maybe it's because you weren't producing sperm at the time.


VM, thank you!

And I will try fenugreek, daveman also suggested it.

But since I have Zero-sperm now, I wonder if it could still work?
« Last Edit: 26/05/2011 19:38:56 by demografx »
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13345 on: 26/05/2011 19:41:46 »
Nacebo? Wow, this place is always teaching me something new!
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Offline daveman

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« Reply #13346 on: 26/05/2011 22:48:27 »
Quote from: demografx on 26/05/2011 19:22:42
Quote from: Vincent Marcus on 25/05/2011 22:23:00

Demo, personally I think your remaining 20% is most likely caused by semen and if you eliminated semen production you would eliminate that 20%. However I base that mainly on Animus's successful surgery and his case is still only one case no matter how successful it was meaning there may be a possibility it won't work for everyone with POIS....
...
...
Perhaps this means fenugreek reduces POIS by reducing sperm production. Demo, did you say you tried fenugreek? If it didn't work for you maybe it's because you weren't producing sperm at the time.


VM, thank you!

And I will try fenugreek, daveman also suggested it.

But since I have Zero-sperm now, I wonder if it could still work?

I was thinking more about Lauracostis's theory which involves the whole hormonal chain reaction more than the sperm itself.

Perhaps the fenugreek may not contribute enough to acheive what he was speaking about, but since the progestin caused problems for you maybe we can give it a second more agreeable try with something a little less potent.

640mg 1 - 2 hrs before and one right after. On a full stomach works best they say.

Think it needs maintenance on non-O days. Same dose I think, one in the morning one at night.
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How does Murphey do it??
 

Offline demografx

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« Reply #13347 on: 27/05/2011 01:32:14 »
From our friend, Stefanie, at NORD


Dear Demo,

Despite what initially appeared to be enthusiasm on the part of Vesselin Dimov, MD, University of Chicago, and his colleague, Againdra K. Bewtra, MD, Creighton University,  I have not heard back from either of them after Dr. Dimov contacted me.
I did make two attempts at follow-up, but to no avail.  They both have excellent credentials, but they apparently are not interested in pursuing evaluations and testing.

There are others on my growing list of researchers who may be quite interested in evaluating men from the forum. So -- it's onward and upward!  There is no turning back! :-)

I will let you know as I hear from other physicians/researchers.

In the meantime, I understand that there have been discussions about a research grant sponsored by your group.  Excellent!!!!!  I am going to be sending information to you about NORD's research grant program for rare disorders -- our program may suit your needs perfectly! :-)





Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

 
--------------------------------------------------------------------------------------------
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Offline Animus

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13348 on: 27/05/2011 03:11:55 »
Quote from: demografx on 24/05/2011 15:36:33
Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).

Demo,
I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.
Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.
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Offline Vincent M

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13349 on: 27/05/2011 04:27:39 »
Quote from: demografx on 26/05/2011 19:22:42
Quote from: Vincent Marcus on 25/05/2011 22:23:00

Demo, personally I think your remaining 20% is most likely caused by semen and if you eliminated semen production you would eliminate that 20%. However I base that mainly on Animus's successful surgery and his case is still only one case no matter how successful it was meaning there may be a possibility it won't work for everyone with POIS....
...
...
Perhaps this means fenugreek reduces POIS by reducing sperm production. Demo, did you say you tried fenugreek? If it didn't work for you maybe it's because you weren't producing sperm at the time.


VM, thank you!

And I will try fenugreek, daveman also suggested it.

But since I have Zero-sperm now, I wonder if it could still work?

My hunch is that if you try fenugreek it will just make you tired, but maybe it'll work since there's really no way I can know at this point. But the study said fenugreek lowered testosterone in the rats, and if you have low testosterone levels already then it might hurt you rather than help. I'm beginning to suspect that my normal testosterone levels were too high, which is why my anxiety was reduced when i started taking fenugreek, but that still doesn't explain why fenugreek helps with my physical POIS pains such as joint & muscle pain and eye burning unless those pains were caused by high anxiety.

It took me about two weeks to realize that fenugreek was having a positive impact on me. Also I'm not sure if fenugreek would still work for me without the garlic & milk I take with it, but I did go about a week without fenugreek and just took garlic w/ milk and felt awful the entire week. Then merely a couple days after I began taking fenugreek again I felt a lot better (maybe 30% relief from POIS, maybe more).
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Taking ginger tea, fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.
 

Offline Animus

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13350 on: 27/05/2011 07:22:29 »
VincentM, How did you come across Fenugreek? Are there any sources on the internet that explain it's medicinal use?
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Offline Habibou

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« Reply #13351 on: 27/05/2011 10:51:48 »
Have you ever talk about increasing the semen production to see if the POIS is worst?
I saw that zinc + arginine worked for many people... i know it isn't a great test but it can make the research improve...  [:D]
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Post Orgasmic Illness Syndrome (POIS)
« Reply #13352 on: 27/05/2011 11:07:27 »
Quote from: demografx on 27/05/2011 01:32:14
From our friend, Stefanie, at NORD


Dear Demo,

Despite what initially appeared to be enthusiasm on the part of Vesselin Dimov, MD, University of Chicago, and his colleague, Againdra K. Bewtra, MD, Creighton University,  I have not heard back from either of them after Dr. Dimov contacted me.
I did make two attempts at follow-up, but to no avail.  They both have excellent credentials, but they apparently are not interested in pursuing evaluations and testing.

There are others on my growing list of researchers who may be quite interested in evaluating men from the forum. So -- it's onward and upward!  There is no turning back! :-)

I will let you know as I hear from other physicians/researchers.

In the meantime, I understand that there have been discussions about a research grant sponsored by your group.  Excellent!!!!!  I am going to be sending information to you about NORD's research grant program for rare disorders -- our program may suit your needs perfectly! :-)





Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

 
--------------------------------------------------------------------------------------------

Stephanie is so cool, glad to have her on our team!!
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13353 on: 27/05/2011 13:09:52 »
Quote from: Animus on 27/05/2011 03:11:55
Quote from: demografx on 24/05/2011 15:36:33

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).



Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.



Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.


« Last Edit: 27/05/2011 15:28:34 by demografx »
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13354 on: 27/05/2011 15:33:11 »
Quote from: Nightingale on 27/05/2011 11:07:27

Stephanie [from NORD] is so cool, glad to have her on our team!!


Yes she is, and so am I (glad to have her)!!
« Last Edit: 27/05/2011 17:45:16 by demografx »
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13355 on: 27/05/2011 15:40:02 »
Quote from: B_Jim on 25/05/2011 20:59:36
Quote
To the French-speaking members: is this a good or bad translation from Google?

Some mistakes but it's correct.

I've contacted Alui by MP. I've proposed to use french (or other languages )in private messages but to keep english mainly on the forum. It's a good idea to open topics on ohter languages on the Pois Center forum.


Thank you, B_Jim!
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Offline Animus

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« Reply #13356 on: 27/05/2011 20:13:01 »
Quote from: demografx on 27/05/2011 13:09:52
Quote from: Animus on 27/05/2011 03:11:55
Quote from: demografx on 24/05/2011 15:36:33

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).



Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.



Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.




Yes, I think putting it in terms of semen regeneration is intuitive for me too. And I think this could be a viable second theory to the auto-immune allergy theory proposed by Dr.Waldinger.

Incidentally, I'd like to send him a DVD copy of the TLC show. I noticed he has an address posted on his POIS website. Shall I try to send it there?...
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13357 on: 27/05/2011 20:47:15 »
Whoops, Animus, I almost forgot!! Yes, please send it there!
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Offline Vincent M

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Post Orgasmic Illness Syndrome (POIS)
« Reply #13358 on: 27/05/2011 20:48:51 »
Quote from: Animus on 27/05/2011 07:22:29
VincentM, How did you come across Fenugreek? Are there any sources on the internet that explain it's medicinal use?

I found out about fenugreek here at the nsf forum and decided to try it since there were some people here who did quite well on it. I also tried Relora for the same reason, but I think it just made me tired however I did only take it for about 4 days.

I did a quick google search and it seems there are very few studies that have been done on fenugreek, but people claim it helps with diabetes and male hairloss and makes women produce more breast milk and some other things too but I forget what they are.
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Taking ginger tea, fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.
 

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« Reply #13359 on: 27/05/2011 22:02:08 »
Animus, it would be great if the 2 POIS physician-authors also get the DVD, Dr Goldmeier and Dr Dexter, on our Collaborator's List.

If that's  asking a lot, let me know how I can assist. Or, since they're both in London we could simply alert them to the summer TLC airing?

Thank you very much for taking care of Dr Waldinger!
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