Post Orgasmic Illness Syndrome (POIS)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1300 on: 19/09/2008 02:45:03 »
Good work in contacting Dr Schweitzer demografx!

It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!

Hurray, I hope it's ok with you, I'm sending your post to Dr Schweitzer as an indication of the interest here.
« Last Edit: 19/09/2008 03:13:32 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1301 on: 19/09/2008 02:53:52 »
Thanks so much Demografx.  In fact, I have been in contact with Dr. Waldinger.  He said a couple months ago that he would have another paper in 6 months (according to him there is hope and that we have to remain patient); I didn't explicitly mention his name because I didn't want to unfairly raise hopes.  He knows about this thread; a second outside reminder would probably be a good thing though!  There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.

Great work everyone.


Thank you, Counterpoints. I have spoken to Dr Waldinger as well, and B_Jim has. But he has been too distracted with new projects recently.

Dr Schweitzer I feel is our best emissary right now.

"Another paper in 6 months"? That's what he told me 5 years ago [;D]
« Last Edit: 19/09/2008 03:21:04 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1302 on: 19/09/2008 03:09:24 »
Counterpoints, I really hope we can get the experience of Waldinger-Schweitzer on board. As to other researchers, they would have to start from scratch. Please don't get me wrong, if we can't get the experienced team on board for whatever reason, timing, priorities, etc., then we should absolutely keep looking for people in endocrinology/internal medicine.

My only concern is for the possibly steep learning curve of someone unfamiliar with POIS. Even Dr Waldinger took a few years to understand POIS patients' complaints and symptoms.
« Last Edit: 19/09/2008 07:19:21 by demografx »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1303 on: 19/09/2008 03:27:07 »
Absolutely fantastic Demografx !!! Many thanks for this. I've read the paper kindly sent by Pyropeach and i was very surprised. I knew all the story on Dr Waldinger and POIS by this forum but it's an other thing to read it for the first time.  I'm looking forward to read them again. And even if this is going nowhere, you've tried, this is the main thing. After all these years of misery one more deception won't be so terrible, we just have to continue in the same way.

Girlwind i wanted to do this test after your initial post. It will be interesting to do it again  after you take the supplement. (I can't find where it's written 16mcg of iodine.)
I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.
« Last Edit: 19/09/2008 03:28:51 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1304 on: 19/09/2008 03:42:40 »
Absolutely fantastic Demografx !!! Many thanks for this. I've read the paper kindly sent by Pyropeach and i was very surprised. I knew all the story on Dr Waldinger and POIS by this forum but it's an other thing to read it for the first time.  I'm looking forward to read them again. And even if this is going nowhere, you've tried, this is the main thing. After all these years of misery one more deception won't be so terrible, we just have to continue in the same way.

Girlwind i wanted to do this test after your initial post. It will be interesting to do it again  after you take the supplement. (I can't find where it's written 16mcg of iodine.)
I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.
Thank you, martin88! This is one of the most promising times for this crazy, wicked illness!!

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Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1305 on: 19/09/2008 04:14:15 »
Good work in contacting Dr Schweitzer demografx!

It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!

Hurray, I hope it's ok with you, I'm sending your post to Dr Schweitzer as an indication of the interest here.

Absolutely fine by me. With over 100 POIS sufferers posting on this forum alone, I think we represent the tip of the iceberg. As POIS awareness grows, I believe that thousands of people could ultimately be helped - these are exciting times for those of us looking for a cure!

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1306 on: 19/09/2008 05:23:54 »
Counterpoints, I really hope we can get the experience of Waldinger-Schweitzer on board. As to other researchers, they would have to start from scratch. Please don't get me wrong, if we can't get the experienced team on board for whatever reason, timing, priorities, etc., then we should absolutely keep looking for people in endocrinology/internal medicine.

My only concern is for the possibly steep learning curve of someone unfamiliar with POIS. Even Dr Waldinger took a few years to understand POIS patients' complaints and symptoms.

I think we should have as many serious medical researchers looking into this as we can get, even if Waldinger-Schweitzer are also investigating.  It will offer additional expertise and perspective. And a researcher could catch up on current progress very quickly - it's what's demanded in their profession.

I'm very excited by all this though. :).  I agree it would be wonderful to have Waldinger and Schweitzer helping us.
« Last Edit: 19/09/2008 19:43:38 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1307 on: 19/09/2008 05:26:27 »
The only thing that worries me is that we might get our hopes up too high about the idea of definitive "CURE"
for POIS. Having been through the roller coaster ride of CFS for 30 years, and having had so many potential hopes for
curing that turn sour, with minimal or no results, I fear that we may be really disappointed if these experts don't have
the big cure for POIS that we want so badly. Maybe it might be better emotionally to frame it up with a wait and see
what they have attitude. I just don't want us to feel devastated, if they fail to give us the silver bullet we want.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1308 on: 19/09/2008 05:52:46 »
I think we should have as many serious medical researchers looking into this as we can get, even if Waldinger-Schweitzer are also investigating.  It will offer additional expertise and perspective. And a researcher could catch up on current progress very quickly - it's what's demanded in their profession.

I'm very excited by all this though. :).  I agree it would be wonderful to have Waldinger and Schweitzer helping us.
The only thing that worries me is that we might get our hopes up too high about the idea of definitive "CURE"
for POIS. Having been through the roller coaster ride of CFS for 30 years, and having had so many potential hopes for
curing that turn sour, with minimal or no results, I fear that we may be really disappointed if these experts don't have
the big cure for POIS that we want so badly. Maybe it might be better emotionally to frame it up with a wait and see
what they have attitude. I just don't want us to feel devastated, if they fail to give us the silver bullet we want.

Counterpoints and girlwind, you both make different yet shared viewpoints to some degree, i.e., "let's not put all our eggs in one basket."

Very interesting!

I wonder how researchers would feel about "competing"? Also, I think our "research" should be geared fully toward a cure, and not just publication material. Research papers alone would be very interesting but too many people here desperately need a definitive end to this POIS nightmare of ours.

Meanwhile, I'm thrilled we have made this amount of progress in just a year and a half. on several fronts: proof that "we're not alone", understanding the amazing variety of symptoms in POIS suffering, worldwide publicity, a video, a survey research form site, shared insights, potential cures never imagined previously, sifting through the laughable (Joe Anthony is angry that I deleted his advertising, which he claims is a CURE for POIS) and camaraderie!
« Last Edit: 19/09/2008 19:45:06 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1309 on: 19/09/2008 06:25:07 »
girlwind, in my last post I didn't fully respond to your well-stated thoughts about emotional levels of disappointment.

I agree 100%, it's easy to become devastated when hopes are soaring, but the reality comes crashing down that success is minimal, or worse, non-existent.

At this time, I don't think any researcher would promise a cure - only the charlatans who periodically visit and entertain us. Perhaps I use the word "cure" too frequently; my reason for it is to make sure we're focused on our true objective and not get side-tracked to some other channel...like becoming famous (e.g., published or part of a TV documentary), or becoming a social network, etc.

I agree. "Wait and see" is a healthy way to be.
« Last Edit: 19/09/2008 06:29:59 by demografx »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1310 on: 19/09/2008 12:57:07 »
Demografx, normally that is the case for me too, NE = orgasm. I am stumped as to what is going on here, sorry I have no answers, perhaps we will know in time.
For me nocturnal emission and orgasm are causing severe pois.
But i can notice some differences between the two :
NE occurs while sleeping, wake me up, and put me in an awful state of insomnia with a strong desire to sleep but it isn't possible because of a racing mind for the rest of the night(very pronounced symptom). I think NE stop an important phase of sleep. After NE i'm more depressed in the next days, it's really unbearable.
I'm not sure of the following because usually i avoid nocturnal emissions (by having orgasms instead), but i think NE cause a bit less physical fatigue and a lot more mental fatigue/depression than orgasm.
 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1311 on: 19/09/2008 17:44:36 »
Schweitzer-Waldinger update

Email to me today from Dr. Schweitzer:
Dear Sir,

Thanks for your e-mail. I have contacted Dr. Waldinger yesterday (Dutch time). He advised me to send his e-mail adress to you for further correspondence.

Sincerely,

Dave Schweitzer MD.

My email to Dr Waldinger:
Dear Dr. Waldinger,
 
We spoke a few years ago. I wanted to write to you first but I could not locate your current email address.
 
I am a POIS sufferer and also the moderator of The POIS Forum.
 
Below is my letter to Dr Schweitzer which explains everything.
 
Can you help us?
(letter I posted yesterday to Dr Schweitzer follows)
==============================================================
To all:
I was a tad disappointed with the "Dear Sir" from Schweitzer and the simple pass-off to Dr Waldinger (although Dr Schweitzer yesterday on the phone clearly emphasized that Dr Waldinger is the prime conceptualizer and Dr Schweitzer is only the implementer)

Am I being too sensitive?
« Last Edit: 19/09/2008 17:48:11 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1312 on: 19/09/2008 18:13:26 »
For me nocturnal emission and orgasm are causing severe pois.
But i can notice some differences between the two :
NE occurs while sleeping, wake me up, and put me in an awful state of insomnia with a strong desire to sleep but it isn't possible because of a racing mind for the rest of the night(very pronounced symptom). I think NE stop an important phase of sleep. After NE i'm more depressed in the next days, it's really unbearable.
I'm not sure of the following because usually i avoid nocturnal emissions (by having orgasms instead), but i think NE cause a bit less physical fatigue and a lot more mental fatigue/depression than orgasm.
It's such a shame that something as pleasant as NE can cause such great misery!

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1313 on: 19/09/2008 18:19:10 »
Schweitzer-Waldinger update
==============================================================
To all:
I was a tad disappointed with the "Dear Sir" from Schweitzer and the simple pass-off to Dr Waldinger (although Dr Schweitzer yesterday on the phone clearly emphasized that Dr Waldinger is the prime conceptualizer and Dr Schweitzer is only the implementer)

Am I being too sensitive?


No, Demografx, you're not being too sensitive. This is why I would like to urge emotional restraint, when it comes to getting
these researchers' attention. We have all been in such need of help for SO LONG for this malady-without-end. So it's real tempting
to get overexcited by the possibility of hope for that illusive POIS cure. At this point, that's ALL it is. There is no promise of any-
thing more than that YET. Which is not to say that real good things aren't on the brink of happening, but rather that we are in
the process of finding out what might happen next. Everybody loves certainty, me included, but life is rarely that generous.

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Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1314 on: 19/09/2008 18:45:42 »
It's hard not to get excited when the likes of Dr Waldinger and Dr Schweitzer are aware of our efforts!

It's a positive move for Dr Schweitzer to have spoken to Dr Waldinger, who has invited you to e-mail him. While we may be desperate to seek cures for ourselves, POIS is only one part of the professional lives of these two doctors, and they may not be able to invest significant amounts of their time in POIS research at the moment.

The very fact that this large forum exists is proof to the doctors that many people suffer from POIS, and that their POIS research was a significant discovery.

I'm sure that this forum will be a very valuable resource for Dr Waldinger if he follows up his POIS studies - I look forward to being able to support him in his research when his professional duties allow him the time to do so.

Thanks for your continued fantastic work on this forum, demografx - the more we can raise awareness of this issue, the more likely it will be that medical professionals will add their expertise to our efforts :)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1315 on: 19/09/2008 19:27:55 »
No, Demografx, you're not being too sensitive. This is why I would like to urge emotional restraint, when it comes to getting
these researchers' attention. We have all been in such need of help for SO LONG for this malady-without-end. So it's real tempting
to get overexcited by the possibility of hope for that illusive POIS cure. At this point, that's ALL it is. There is no promise of any-
thing more than that YET. Which is not to say that real good things aren't on the brink of happening, but rather that we are in
the process of finding out what might happen next. Everybody loves certainty, me included, but life is rarely that generous.
Many thanks, girlwind! I feel very hopeful and somewhat confident that we're getting closer to a POIS cure - yet realistic, based on my own experience. You can relate to this: after 30 years of searching, I finally gave up hope long ago. Until this Forum started, which made me more aware of my POIS and how everything I do might affect it. Levitra now cures about 75% of my POIS agony. Cialis was a disaster; my hopes were super-high for a 100% cure yet it didn't work at all!

I'm hoping that further serious study by outside researchers of the Levitra-Cialis success-failure may have implications for everyone! I hope that's not too egotistical, and maybe that will even have implications for women's POIS. It's a great start, in my opinion. And John21's early garlic success, and others here who have had symptom improvement with other experiments...this all sounds really good and positive and not dreamland.

I'm not arguing, girlwind. I'm just suggesting that too much emotional conservatism can lead to pessimism, but there is much evidence that success is attainable in the not too distant future.

ps - my usual WARNING to everyone: if you don't have ED, Levitra in my opinion should not be attempted until further research is completed. What works for my POIS in Levitra is unknown. But even for those with ED, it can affect the heart and, some say, vision.
« Last Edit: 19/09/2008 20:02:16 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1316 on: 19/09/2008 19:50:23 »
It's hard not to get excited when the likes of Dr Waldinger and Dr Schweitzer are aware of our efforts!

It's a positive move for Dr Schweitzer to have spoken to Dr Waldinger, who has invited you to e-mail him. While we may be desperate to seek cures for ourselves, POIS is only one part of the professional lives of these two doctors, and they may not be able to invest significant amounts of their time in POIS research at the moment.

The very fact that this large forum exists is proof to the doctors that many people suffer from POIS, and that their POIS research was a significant discovery.

I'm sure that this forum will be a very valuable resource for Dr Waldinger if he follows up his POIS studies - I look forward to being able to support him in his research when his professional duties allow him the time to do so.

Thanks for your continued fantastic work on this forum, demografx - the more we can raise awareness of this issue, the more likely it will be that medical professionals will add their expertise to our efforts :)
Hurray, I don't know how to thank you for that wonderful post, it was beyond encouraging! And you're absolutely right, curing worldwide POIS - as crucial as it is to us - simply may not be their highest priority at this time. Sobering thought.
« Last Edit: 19/09/2008 19:52:48 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1317 on: 19/09/2008 20:01:05 »

I'm not arguing, girlwind. I'm just suggesting that too much conservatism can lead to pessimism, but there is much evidence that success is attainable in the not too distant future.


I am cautiously optimistic. I've been promised too much too often with CFS to be jumping up and down with glee
just yet. But I am happy that we are making progress on this journey.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1318 on: 19/09/2008 20:06:44 »
I am cautiously optimistic. I've been promised too much too often with CFS to be jumping up and down with glee just yet. But I am happy that we are making progress on this journey.

My sentiments exactly, Dr Girlwind! [;D]

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1319 on: 20/09/2008 01:15:24 »
There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.
Great work everyone.
Great work to you Counterpoints. Not all is lost Demografx.
And maybe we'll have help from Dr Waldinger. Not necessarily in the forum but in a further paper. If he decide to post here he'll be very welcome. It's a long way to go!
« Last Edit: 20/09/2008 06:51:25 by martin88 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1320 on: 20/09/2008 02:01:53 »
Not all is lost Demografx.
And maybe we'll have help from Dr Waldinger. Not necessarily in the forum but in a further paper. If he decide to post here he'll be very welcome. It's a long way to go!
martin88, thank you, but I never felt "all is lost." I was just hoping for a stronger immediate response. Did you read today's communication as a brush-off for direct help to the Forum?

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1321 on: 20/09/2008 07:03:17 »
i thought Dr Schweitzer passed all to Dr Waldinger and didn't want to participate here... I'm going to sleep !

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1322 on: 20/09/2008 14:31:32 »
Has anyone noticed any seasonality to their symptoms? I had not previously made any association with POIS and time of the year, but I am just curious about it now. After watching the video of Dr Holick I am wondering if there could be a link.

http://www.uvadvantage.org/Home/AudioVideo/tabid/69/Default.aspx

I had some symptom-free NEs this summer which I attributed to my addition of raw garlic to my diet.  Garlic may indeed have been what helped me, but I am realizing that that was the time of the year of maximum vitamin D production by the skin. Reading back in the forum I claimed my success on July 26th, and July was a really nice month where I live, lots of nice weather for me to get out in the sun. August and September have been mostly wet and dark, and therefore less time was spent outdoors. And as I mentioned, I had some minor symptoms recently after orgasm. I am therefore wondering if lower serum vitamin D levels might be a cause.  Although I have never associated POIS with seasonality, I have indeed noticed that my double vision problems always arose in the springtime, a time of the year when the body has been apparently running off the vitamin D “storage tank” all winter. 

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1323 on: 20/09/2008 18:51:07 »
i thought Dr Schweitzer passed all to Dr Waldinger and didn't want to participate here... I'm going to sleep !
The impression I got on the phone is that Dr Waldinger calls the shots and that, although Dr Schweitzer may have wanted to participate, after he spoke to Dr Waldinger the latter wanted to communicate with me directly, i.e., "let me handle it". At this time it's a guess where it's going.

martin88, perhaps I was too pessimistic in my immediate posting of my interpretation of the follow up from Dr Schweitzer.
« Last Edit: 22/09/2008 18:25:42 by demografx »

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Offline jplewin

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1324 on: 20/09/2008 19:05:42 »
Hi everybody, it's Juan Pablo from Chile again... it's been a long time.
Just writing here to keep in touch. I have not been following the thread lately, but today (feeling bad on POIS after a nocturnal emission) I entered again. I was glad to see the video posted in Youtube. I think it is a very good summary of what happens to us. I will use it when I have to explain what is happening to me...
Well, I hope everybody is doing well in their lives, and let's not feel pity for ourselves. Sometimes that happens to me this kind of days, but well... it's great help to know this thread still lives and growing...

Ok... greeting from Santiago, Chile. Bye.

JP

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1325 on: 20/09/2008 19:30:46 »
Juan Pablo, great to see you again! Did you get my email?
« Last Edit: 21/09/2008 01:39:09 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1326 on: 20/09/2008 19:35:03 »
Has anyone noticed any seasonality to their symptoms? ...I had some symptom-free NEs this summer which I attributed to my addition of raw garlic to my diet....I had some minor symptoms recently after orgasm.
John, I never noticed any seasonality differences in my POIS. But looking at your garlic experiences, unless I'm reading incorrectly...it seems to work! Not perfectly lately, but "minor symptoms recently" sounds like it's still working! My Levitra works 75%, but it's still hugely in the right direction. Am I missing something?

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1327 on: 20/09/2008 20:06:12 »
Demografx, yes it could indeed be the garlic that produced the results, but I am just speculating on another possibility.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1328 on: 20/09/2008 20:21:39 »

Has anyone noticed any seasonality to their symptoms? I had not previously made any association with POIS and time of the year, but I am just curious about it now.


Actually, seasonality is an interesting point. When I think about it, I do think that my POIS symptoms are
better during warmer weather. For me that could be attributed to the fact that my overall immunity is
better when it's warmer, as I am less prone to colds/flus/infections then, and consequently I have more
energy "to spare."

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1329 on: 20/09/2008 20:31:48 »

Girlwind i wanted to do this test after your initial post. It will be interesting to do it again after you take the supplement. (I can't find
where it's written 16mcg of iodine.)    I'm not sure if you've done an other test for the thyroid, it should be showing something if the
tincture test is meaningful.


I had to call the company to find out how much iodine is in that product (called Modifilan). It's a concentrate of
a brown seaweed called laminaria japonica--basically Japanese kelp. They told me 6 capsules equals 80-100 mcg.,
so that's 16.66 mcg per capsule. I started with a higher dose of 4 capsules first thing in am on empty stomach,
but now have reduced it to just one capsule per day.

This seaweed concentrate contains a high level of sodium alginate, which is known to remove heavy metals and
radiation from your body. In fact, it was created by Russian scientists to help the victims of the Chernobyl disaster.
I have experienced some detox symptoms, which were a bit uncomfortable at the higher dose, so I'm doing less.
On the other hand, I've seen benefits already for some of the thyroid symptoms that I had been having. I will
retest for the iodine deficiency after a few weeks.
« Last Edit: 21/09/2008 01:45:12 by girlwind »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1330 on: 20/09/2008 21:04:12 »
Demografx, yes it could indeed be the garlic that produced the results, but I am just speculating on another possibility.
Thanks, John, I misunderstood, I thought you were questioning the garlic completely. So seasonality, Vitamin D and garlic might have some interplay. The mystery deepens [:)]
« Last Edit: 20/09/2008 21:26:24 by demografx »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1331 on: 20/09/2008 23:51:18 »
Girlwind, I have done the iodine test, i bought iodine tincture for 2 dollars. 12h later the iodine patch is still visible but is not far to disappear completely. Strange substance!
Perhaps it is skin thickness related.
A long time ago i tried laminaria , maybe digitata, (not japonica from the supplement you mention), and it was good for palor. Cod is rich in iodine (unsalted and without additives phosphates).I'll try this. It contains 110mcg of iodine for 100g (average value),

Concerning insomnia caused by sugar it can be a serotonin adaptation/change. There are sleep cycles every 1h30 or 2h00. In the evening you can feel these cycles, you're sleepy for a while, yawning, and then if you don't go to sleep it pass, and it's back 2 hours later. If i go to sleep sooner than usual (i do it when i occasionally eat sugar) then i wake up earlier than usual, in the middle of the night. I'm not sure but it can be this break of cycles.It's not only that however, my insomnia has certainly other major causes.
John i'm always better in automn/winter, perhaps more dopamin and i don't know why ! Vitamin D has a positive effect for me. It's more effective when i'm in physical activities (sports)


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1333 on: 22/09/2008 02:54:21 »
DR WALDINGER UPDATE

Email received today from Dr. Marcel Waldinger

Dear Mr [demografx],
 
I am impressed by the number of men that are member of your website. You have tried to contact me and contacted my colleague Dr. Schweitzer. What can I do for you or what are your expectations in contacting me?
 
With kind regards,
 
Dr. M.D. Waldinger

My reply

Dear Dr. Waldinger,
 
Thank you very much for writing back. Our Forum is very impressed with your pioneering work on POIS!
Again, my apologies for not contacting you first, but we could only locate Dr Schweitzer's email address.
 
As a first step, we would be honored and greatly appreciate your visiting, then joining our POIS website (you can of course use a confidential username and we would protect that). By reading what we are writing in terms of POIS experience, we would look for your guidance as to how we might go about achieving effective treatments at a faster pace than we are now.
 
So far, we have had some exciting positive tests with various treatments we have tried. But they are not totally consistent, and we could use your help in understanding what we found.
 
We have also considered PET scans, hormonal/endocrinology studies, etc. Your input as a physician and someone who understands POIS (indeed is the founder of the POIS name) would be invaluable!
 
In short, your expert counsel and advice at The POIS Forum is what we are hoping for.
 
Dr. Waldinger, If there is a way we can also help you to build on your 2002 original study, we of course could offer you a wealth of data and much cooperation.
 
We are constantly getting new visitors who are grateful to find that someone understands and is actually on a path to effective treatment.
 
I very much look forward to your positive response.
 
Best regards,
 
[name]
aka "demografx" - Moderator - POIS Forum

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1334 on: 22/09/2008 04:32:57 »
Nice Demografx. In Dr Waldinger's paper it's interesting that they have a treatment for pois (very low dose of flutamine) which is working to reduce the ejaculation frequency. It has an action on androgen receptors. It doesn't cure pois unfortunately but reduce it. It could be interesting to have a post from these two cases of pois, about their experience with flutamine.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1335 on: 22/09/2008 04:43:49 »
Thanks, Martin! Yes, it would be very nice to get their flutamine posts, I agree.

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Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1336 on: 22/09/2008 17:33:33 »
Has anyone noticed any seasonality to their symptoms? I had not previously made any association with POIS and time of the year, but I am just curious about it now. After watching the video of Dr Holick I am wondering if there could be a link.

http://www.uvadvantage.org/Home/AudioVideo/tabid/69/Default.aspx

I had some symptom-free NEs this summer which I attributed to my addition of raw garlic to my diet.  Garlic may indeed have been what helped me, but I am realizing that that was the time of the year of maximum vitamin D production by the skin. Reading back in the forum I claimed my success on July 26th, and July was a really nice month where I live, lots of nice weather for me to get out in the sun. August and September have been mostly wet and dark, and therefore less time was spent outdoors. And as I mentioned, I had some minor symptoms recently after orgasm. I am therefore wondering if lower serum vitamin D levels might be a cause.  Although I have never associated POIS with seasonality, I have indeed noticed that my double vision problems always arose in the springtime, a time of the year when the body has been apparently running off the vitamin D “storage tank” all winter. 


Mine seems to be worse in warmer weather.  I dont think it is so much the warm weather but humidity  which tends to wear me down anyway.  I noticed when I was in a mountain desert region I had less effects than the tropical  coastal area I live.  It seems a little less in drier and thinner air.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1337 on: 22/09/2008 21:21:13 »
I don't think weather has much to do with it for me.  I usually get worse in the summer, but that's also when I'm least busy -- perhaps I am focusing on the symptoms more, or I am living more unheathily (drinking more, etc).

One thing I have meant to ask you guys about:
How do you go so long (weeks or a month) without orgasm?

After 3 days, the symptoms of having no orgasm are almost as insufferable as the post-orgasm symptoms.  I have trouble focusing, I feel as though I am on adrenaline, and my body desperately wants the "orgasm fix".  I don't have brain-fog, but I feel like I'm in withdrawal and that I can't relax unless I have an orgasm.  It's much worse after I've had alcohol too.


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1338 on: 22/09/2008 21:47:58 »
Counterpoints, you've just described the cruel double whammy of POIS!

Perhaps you could investigate what martin88 describes above: flutamine - as discussed in Dr Waldinger's study.

Reminder to all: to get a copy of Dr. Waldinger's POIS paper, contact pyropeach with your email address.

My solution was to stop improving low libido that developed recently.

« Last Edit: 22/09/2008 22:55:50 by demografx »

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1339 on: 22/09/2008 22:03:27 »
Counterpooints,
Removing anything that would remotely get you excited from before your eyes is the way to be chaste... even something like a TV show with people kissing must be avoided at first. It might seem impossible, but that will change as you adapt. Think of it like quitting smoking, or even coffee, it's not easy but once you have quit for a while it gets easier.
It might be helpful to temporarily quit drinking while you adjust.
« Last Edit: 22/09/2008 22:06:35 by John21 »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1340 on: 22/09/2008 23:07:55 »
Going without orgasm is like going without ice cream. The momentary pleasure is not worth the days of
recuperation that follow. Besides, sex without orgasm can be very enjoyable, once you learn how to ride
the pleasure wave.  It's the "accidental orgasms" in my sleep that I have no control over. But lately, my
symptoms from those haven't been as bad. I'm getting between 50-75% relief from all my adrenal and
thyroid boosting supplements, and only taking one day to recover. Also, having low libido and only one
or two "accidentals" per month helps.

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Offline neilep

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1341 on: 22/09/2008 23:34:33 »
WELL DONE DEMOGRAFX !!

This man is an incredible amabassdaor not just of the site but of the POIS cause and is most certainly the foundation of this forum !!

Men are the same as women, just inside out !

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1342 on: 22/09/2008 23:44:40 »
NEIL,

Flattery will get you everywhere!

Thanks a bunch!

 [;D]

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1343 on: 23/09/2008 01:37:05 »
I'm getting between 50-75% relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.
girlwind, this is wonderful news. If it's not too personal, can you say on how many occasions you've experienced this relief?
« Last Edit: 23/09/2008 01:38:49 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1344 on: 23/09/2008 02:40:01 »
I'm getting between 50-75% relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.
girlwind, this is wonderful news. If it's not too personal, can you say on how many occasions you've experienced this relief?

Actually the last three times. And I'm just beginning to get on top of the thyroid problem.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1345 on: 23/09/2008 03:43:07 »
I'm getting between 50-75% [POIS] relief from all my adrenal and thyroid boosting supplements, and only taking one day to recover.

girlwind, this is wonderful news. If it's not too personal, can you say on how many occasions you've experienced this relief?

Actually the last three times. And I'm just beginning to get on top of the thyroid problem.

Congratulations, girlwind, this sounds like a breakthrough! And unlikely that it's a placebo effect 3X! Or are you still cautiously optimistic? [;D]
« Last Edit: 23/09/2008 03:46:43 by demografx »

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1346 on: 23/09/2008 15:31:39 »

Congratulations, girlwind, this sounds like a breakthrough! And unlikely that it's a placebo effect 3X! Or are you still cautiously optimistic? [;D]


Of course! It will probably have to be 300X consistently, before I can claim that I have found a definitive
solution.  [;)]

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1347 on: 23/09/2008 19:07:56 »
Congratulations but can you detail more the supplements you take ?
I have not really understand : the supplement you talked is the seaweed ?

Hello B_Jim:  Please see my post on page 47, with the message ID 191121, for the list of supplements that I use
to help my adrenal deficiency. And go to my post on page 55, message ID 195193, for the info on the iodine test and
the thyroid boosting seaweed supplement I recently found. (I have been cutting back on it already, as it is causing some
detox symptoms that I am too busy to deal with right now.)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1348 on: 23/09/2008 22:10:23 »
It will probably have to be 300X consistently, before I can claim that I have found a definitive
solution.  [;)]
Sure, girlwind, but then 301-600 will show the same phenomenal result and you'll start questioning the first 300X! [;D]
« Last Edit: 23/09/2008 22:58:30 by demografx »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #1349 on: 24/09/2008 00:34:42 »
Thanks demografx, girlwind, and John, for your responses.  I'll clench my teeth and try to hold out...

Belated thanks also to post-chronic, for his well-articulated response.

John: It is worth thinking about whether you had made any changes in addition to the garlic...  Note that Guthrie and one other also improved with your diet, however.

« Last Edit: 24/09/2008 00:44:17 by Counterpoints »