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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6459897 times)

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15750 on: 13/03/2012 18:36:59 »
Important, for those living in Australia(and for those who do not too!)
I want to announce that ABC - Australia Broadcasting Corporation - is going to broadcast the POIS documentary on 12th April, Thursday, at 8 PM - in "The Catalyst" program. http://www.abc.net.au/catalyst/

 As you know, i decided to be interviewed in the documentary and talked about the forum, and i was recorded having an allergy test of my own semen in The Hague clinic- where Dr.Waldinger and his allergist work-. They are going to send me a copy of the program after they broadcast it, but i would really like to know beforehand your opinion, australian people!

I will share any info i could have on this topic. I hope this will help our cause!
« Last Edit: 13/03/2012 18:38:41 by observercenter »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15751 on: 13/03/2012 21:55:51 »
I don't live in Australia, but this is awesome news, Observer! I'm looking forward to seeing the documentary.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15752 on: 13/03/2012 22:45:38 »

THANK YOU, OBSERVER!!!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15753 on: 13/03/2012 22:49:18 »

THANK YOU,  STEFANIE!! ("nordnurse")
 

Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15754 on: 14/03/2012 01:57:49 »
here this avenue of approach may get you vast more dollars. I think tho for this site you have to have a scientists/doctor/researcher lined up, with the kind of research that you want funded and specifics of how the money would be spent. might take a little while to write all out, but it could generate some serious $. This article discusses the site http://petridish.org/, which is a new take on "crowdfunding".

http://io9.com/5893061/the-best-new-scientific-idea-in-years

If you put in hundred(s) now, several forum members have pledged THOUSANDS more!

Every little donation counts, guys!!!!!!!
 

Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15755 on: 14/03/2012 05:23:14 »
Just wanted to say Welcome Back to Mellivora. 

Also, curious as to how many ppl received allergy tests, done by a professional allergist, that revealed Negative on the skinprick but Positive on the Intradermal.  Thanks
 

Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15756 on: 14/03/2012 07:45:52 »
I have donated $150 to NORD, I know in the grand scheme of things its not much. My currency exchange rate to dollar is 8:1, but every bit helps.

I've just had to end a fantastic relationship with this real special girl after 11 months. I was alone for a long time, and I tried to just put myself out there and work through it. Eventually it became clear to me that I was unable to maintain any sort of close relationship with someone, especially when things became sexually active (then there is no going back). POIS is a debilitating and soul destroying illness.

POIS along with my CFS just made me unable to do things 'normal people' do. Most of the time, I was in an unhealthy state and barely functional. I needed to just be realistic and honest with myself and recognize that it was never going to work out. I am damaged goods.

Over the months and years following this thread, I have tried many of the remedies with only marginal and partial success. Niacin, anti-histamines, vitamins, herbs.... no real cure, no real treatment.

To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory. In my own mind, it just doesn't make much sense.

I'm getting to a point now where I've had CFS nearly 9 years, POIS about the same length of time. In my situation, I think they are linked... cause and effect.  CFS has a huge following, with many thousands of people affected all over the world. There are tons of forums, and many people in the medical field are involved and researching the disease. For CFS (as with POIS), there is no cure, no standard treatment, no way out. Many people seem to only get marginally better (if any). Perhaps some diseases and illnesses will never be cured, modern medicine simply doesn't have an answer (cancers, aids, flu, ME .... etc).

I am always hopeful though, and this is why I donated. Perhaps one day, POIS will be a recognized and researched disease, free of stigma and naysayers. We might be looked upon as the 'early pioneers', who battled this illness, searching for answers.

I share all your frustrations, doubts, fears, and pain. I long for an answer, a scientific explanation, a cure, a pill, a vaccine... any way out. I just want to be normal again.

I hope that there are more people who share my life experience and are willing to give a small portion to this research.

Peace out.

 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15757 on: 14/03/2012 13:03:06 »
Thank you Vincent Marcus and demografx(and all of you, without every contribution you have made during this years i would have not have improved my life to this level!)
 

Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15758 on: 14/03/2012 13:07:04 »
Quote
To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory

I'm 99% convinced I'm not an immune-allergy pois's case too. It's hormonal. I want to try testosterone as soon I can.

I bet there is something more than the sperm/allergy reaction. I believe this is an auto-inmune disorder but the allergy theory falls short to explain it all(In fact, it does not explain the full chain of events leading to our impaired cognitive functions). There are more things that need to be researched.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15759 on: 14/03/2012 14:33:26 »
Just wanted to say Welcome Back to Mellivora. 

Thanks B_Daniel, its good to be back!

I have donated $150 to NORD, I know in the grand scheme of things its not much. My currency exchange rate to dollar is 8:1, but every bit helps.

I've just had to end a fantastic relationship with this real special girl after 11 months..............
..........I am always hopeful though, and this is why I donated. Perhaps one day, POIS will be a recognized and researched disease, free of stigma and naysayers. We might be looked upon as the 'early pioneers', who battled this illness, searching for answers.

I share all your frustrations, doubts, fears, and pain. I long for an answer, a scientific explanation, a cure, a pill, a vaccine... any way out. I just want to be normal again.

I hope that there are more people who share my life experience and are willing to give a small portion to this research.

Peace out.

Hi Porke,

Thanks for writing such an open and soul-bearing message. I'm sure it resonates with many here as it certainly did with me. Added on to the physical sensations of POIS are the emotional consequences and those are the most difficult. I really sympathise that you've had to end such a great relationship. Its a story sure to tug at anyone who reads it.

Thanks for your donation. You may perceive that its not much but I disagree. I'm really grateful for the difference you're making with both your words and your wallet. Its apparent that there isn't a single sufferer here who can afford to pay for the entire NORD grant. So something from everyone is what we need and your contribution matters a lot. We all want the potential benefits and you've hopefully brought us all closer to them by chipping in.

Everyone, if the NORD grant yields what we need it too, think how good you're going to feel knowing that you were one of the people that contributed to it being possible. We are, as Porke says, pioneers.
« Last Edit: 15/03/2012 10:45:43 by mellivora »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15760 on: 14/03/2012 14:37:38 »
And thank you, Porke, for your wonderful, heartfelt post.

There _IS_  a way out. I'm proof of that! As are some lucky others.

FIGHT!!! The best way you know how to "FIGHT" POIS!!! It works!! DON'T GIVE IN!!!!!

 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15761 on: 14/03/2012 19:06:36 »
There a wiki-answer page about the debate ejaculation-testosterone :
http://wiki.answers.com/Q/Does_masturbating_decrease_testosterone_level

Quote
Many scientist types seem to agree that testosterone levels drop temporarily after ejaculation, but that seems to be very short-term.
But it don't gives the sources.

Check this paper, I'll add it to the references on poiscenter

"A research on the relationship between ejaculation and serum testosterone level in men"
http://www.ncbi.nlm.nih.gov/pubmed/12659241

- 7 days...sounds like a familiar period of time...


Also interesting - observations on abstinence and testosterone level:
http://www.reuniting.info/node/2212
« Last Edit: 14/03/2012 19:09:18 by mellivora »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15762 on: 14/03/2012 20:38:00 »
Maybe one day we will understand why testosterone works for me and a few others. Then maybe that knowledge will help others.
« Last Edit: 14/03/2012 21:03:17 by demografx »
 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15763 on: 14/03/2012 22:02:13 »
Quote
To be honest with you guys, I am very skeptical about Dr Waldinger and the 'sperm allergy / reaction' theory

Now I'm 99% convinced I'm not an immune/allergy pois's case too. It's hormonal. I want to try testosterone as soon I can. Demo was right since the beginning.

 I'm not quite buying it either. I'll be looking in, around, and outside the box for the answer until someone figures it out. But that temperature idea did not pan out, it was as out there as it sounded. I had an NE this week and have minor symptoms: cognative speed issues, like the mouse on the wheel is napping. Nothing too severe but bad enough to be noticed by others and to be ridiculed.

I will be contributing a small amount soon if possible, but things are tight for me and I can't really do much about that.  But there must be a way to get some publicity about the need, there are hoardes of well off people who would feel good about helping people with such an affliction. But to get this attention would require some of us going very public with it, think Dr Phil. The other day i saw the show and they had a guy who dresses up in baby diapers and makes his girlfriend feed him with a bottle, infantalism it was called. Man, if his problem is not too unusual to be presented to the nation I'm sure POIS isn't .  But that would be so hard for someone with an affliction that can be almost unmanageable without attention.
 

Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15764 on: 14/03/2012 23:41:44 »
Important, for those living in Australia(and for those who do not too!)
I want to announce that ABC - Australia Broadcasting Corporation - is going to broadcast the POIS documentary on 12th April, Thursday, at 8 PM - in "The Catalyst" program. http://www.abc.net.au/catalyst/

 As you know, i decided to be interviewed in the documentary and talked about the forum, and i was recorded having an allergy test of my own semen in The Hague clinic- where Dr.Waldinger and his allergist work-. They are going to send me a copy of the program after they broadcast it, but i would really like to know beforehand your opinion, australian people!

I will share any info i could have on this topic. I hope this will help our cause!


Hi, Observercenter!!!

Major congratulations to you for making that ABC/Australia news episode possible!!!  We are all looking forward to watching it!!!

There is no question that you will have furthered the POIS cause -- and I KNOW that you will be the scene-stealer!  Your wonderful personality has shone through via every post that you've made.

Break a leg on April 12th!!

Stefanie
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15765 on: 15/03/2012 00:28:36 »
There a wiki-answer page about the debate ejaculation-testosterone :
http://wiki.answers.com/Q/Does_masturbating_decrease_testosterone_level

Quote
Many scientist types seem to agree that testosterone levels drop temporarily after ejaculation, but that seems to be very short-term.
But it don't gives the sources.

Check this paper, I'll add it to the references on poiscenter

"A research on the relationship between ejaculation and serum testosterone level in men"
http://www.ncbi.nlm.nih.gov/pubmed/12659241

- 7 days...sounds like a familiar period of time...


Also interesting - observations on abstinence and testosterone level:
http://www.reuniting.info/node/2212
I have the full text if you want it and i believe there are pictures of the 7 day cycle graph posted earlier by me on the study and also step by step explanations of the graph.  I believe animus also made a custom graph of better quality than the one I posted
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15766 on: 15/03/2012 00:49:45 »
 mellivora "Below" is my re-post off of the pois center

in relation to the sperm regeneration question.  This 5 day sperm regeneration period is the time that it takes for the final conversion of sperm in the epididymis.  This is the most important part, because it is the part that is triggered by sperm loss/ejaculation.  when we ejaculate and lose sperm, the sperm that have been constantly produced and maturing over the last two and half months are sent to the epididymis.  There is a testosterone spike that corresponds with the maturation of the sperm in the epididymis, the testies produce increased amounts of testosterone which in turn cause the maturation process to occur.  A member of the NSF purchased a article on testosterone levels after ejaculation probably about a year ago.  it shows that after ejaculation the loss of the small amount of matured sperm from the epididymis causes testosterone levels to rise from the normal baseline for 7 days, once the small amount of mature sperm are replaced on day 7 testosterone levels fall back to baseline rapidly by day 8.  so on day 7 the total testosterone spike from baseline has returned to normal.  From days 0-5 there is a slow gradual increase in testostrone, from day 6-7 there is a huge spike in testosterone, it is believed that this spike pushes testosterone levels past the threshold of the hypothalamic-pituitary axis and turns the entire process off.  In the article it said that everybody has this 7 day cycle.  It also states that if you have an ejaculation before the end of this 7 day cycle the cycle will just start over again and will last for another 7 days.  If you dont wait 7 days between every ejaculation you will be in the beginning of this cycle continuously.   This is the reason in the past that I have talked about one of the neuro-endocrine chemicals involved with the process of sperm regeneration being the culprit for an immunological reaction.  this would make much more sense that this antigen that is causing an immune reaction is continues during this week long process than just a single exposure to something like your own semen lasting 7 days. 

the article is called "A research of on the relationship between ejaculation and serum testosterone level in men"

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15767 on: 15/03/2012 02:02:34 »


THANK YOU, LAURACOSTIS!!!

 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15768 on: 15/03/2012 03:20:22 »
Important, for those living in Australia(and for those who do not too!)
I want to announce that ABC - Australia Broadcasting Corporation - is going to broadcast the POIS documentary on 12th April, Thursday, at 8 PM - in "The Catalyst" program. http://www.abc.net.au/catalyst/

 As you know, i decided to be interviewed in the documentary and talked about the forum, and i was recorded having an allergy test of my own semen in The Hague clinic- where Dr.Waldinger and his allergist work-. They are going to send me a copy of the program after they broadcast it, but i would really like to know beforehand your opinion, australian people!

I will share any info i could have on this topic. I hope this will help our cause!


Can we see the show online April 12, or do we wait for Archived Shows?

Thanks for your WONDERFUL and much needed promotional effort on behalf of  POIS!

 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15769 on: 15/03/2012 03:55:39 »
I have never took anti-histamines. It might be interesting to test claritin but it will not work for me.

How can you say that without ever taken any antihistamines?

It's very surprising how I have felt while taking claritin.  I don't know if it's the anti-histamine/vitamin C combination, but it seems to be working and I am still POIS free.
 

Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15770 on: 15/03/2012 07:29:56 »
Hi Guys,

Sent $100 to NORD POIS research
 

Offline Vandemolen3

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15771 on: 15/03/2012 12:06:00 »
Now I'm 99% convinced I'm not an immune/allergy pois's case too. It's hormonal. I want to try testosterone as soon I can. Demo was right since the beginning.
I have 50% less symptoms thanks to the desens program. But it could be both: allergy and hormones. Or there could be 2 kinds of POIS: 1. allergy. 2. Hormonal (testosterone?).

If you try testosterone, make sure you get informed well. Because if you are young, what are the consequences of taking testosterone? Good luck!
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15772 on: 15/03/2012 17:41:15 »
Hi Guys,

Sent $100 to NORD POIS research


Terrific Victor. I hope you have taken time to thank yourself on your behalf! Thanks for helping yourself, me and all of us!
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15773 on: 15/03/2012 18:15:08 »
I have the full text if you want it and i believe there are pictures of the 7 day cycle graph posted earlier by me on the study and also step by step explanations of the graph.  I believe animus also made a custom graph of better quality than the one I posted
Thanks lauracostis for getting me up to speed on this. I'd really like to read the whole paper if you could send it to me, thanks!
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15774 on: 15/03/2012 18:21:58 »
here this avenue of approach may get you vast more dollars. I think tho for this site you have to have a scientists/doctor/researcher lined up, with the kind of research that you want funded and specifics of how the money would be spent. might take a little while to write all out, but it could generate some serious $. This article discusses the site http://petridish.org/, which is a new take on "crowdfunding".

http://io9.com/5893061/the-best-new-scientific-idea-in-years

Great post defsync! thanks. I agree crowdsourcing needs to be harnessed. Some moves are being made..

After a bit of a lull there's been some good donation activity here lately. Big thanks to those involved. We have just over 2 weeks until the NORD grant deadline. I propose maximum effort between now and then! Is there much in your life more important than getting your POIS sorted?

Any outside funding suggestions, or better still actions, would be fantastic. If you have been considering making a personal donation, now is the time!
« Last Edit: 15/03/2012 18:24:44 by mellivora »
 

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