Author Topic: Free Flow Discussion about POIS  (Read 636216 times)

demografx

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Re: This may seem like a familiar place.
« Reply #2180 on: January 24, 2019, 05:06:51 PM »
We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing some realistic expectations!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2181 on: January 24, 2019, 05:19:00 PM »
Harmed by research oh jezus. No unstable people for our next research project please.
“No unstable people”?? We’re POISers !!!!!



10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2182 on: January 24, 2019, 05:24:11 PM »
There is a lab for clinical studies/group analysis in Berlin where you can perform such things:
https://www.synevo-ssl.de/en/about-us.html
All you need is money and patients.
Someone else would have to manage this. I’m exhausted ;D
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: This may seem like a familiar place.
« Reply #2183 on: January 24, 2019, 07:44:24 PM »
I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research. :-[
Thanks, I guess I'm not suing then  ;D
« Last Edit: January 24, 2019, 07:46:48 PM by Nas »

Nas

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Re: This may seem like a familiar place.
« Reply #2184 on: January 24, 2019, 07:46:17 PM »
But seeing how the last research went off the rails from Waldinger's research.
That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?
A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.

Depressing period :(
Wow, what an asshole :/ He should've known that research can sometimes be dangerous and that he should be full aware of its implications. Sigh.

demografx

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Re: This may seem like a familiar place.
« Reply #2185 on: January 24, 2019, 11:54:39 PM »
Thanks, Nas.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2186 on: January 24, 2019, 11:58:36 PM »
I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research. :-[
Thanks, I guess I'm not suing then  ;D
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2187 on: January 25, 2019, 06:33:39 PM »
NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).


https://rarediseases.org/?s=pois&submit=


https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/


Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!


« Last Edit: January 25, 2019, 06:37:34 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: This may seem like a familiar place.
« Reply #2188 on: January 25, 2019, 07:18:34 PM »
I just like to mention that I have been recently in contact with a biochemist in Belgium who says he has POIS. I talked to him for a while and he said that he would do a cultured test for the blood and semen, and observe the interaction. He did it, and what he told me that there were no IgG activity observed. I asked him whether he actually had POIS, he generally seems to have it all though he does not have PE. He said that he'll do further tests until he abandones the auto-immune hypothesis. This is his FB profile if any is interested to talk to him: https://www.facebook.com/pdepauw

demografx

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Re: This may seem like a familiar place.
« Reply #2189 on: January 25, 2019, 11:33:51 PM »
Thanks, Nas!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2190 on: January 25, 2019, 11:35:06 PM »

NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).


https://rarediseases.org/?s=pois&submit=


https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/


Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2191 on: January 30, 2019, 06:13:02 PM »
We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing a realistic expectation!

Please also keep in mind that NORD considers this current research to be a  “baby step” with “seed money” that we ourselves raised at POISCenter. The ultimate goal is to attract BIG players, like the National Institutes of Health, with 6-and-7-figure Grants (total funding: $32 Billion/year) to explore POIS in the company of research on major illnesses, such as cancer.

This rarely happens as a first step.

So we are on a journey to prove ourselves as being worthy of major research *after* a first study is reputably published and will hopefully garner major medical attention.

Quantum’s recent announcement of our now having attained 750+ registered POISers at the forum made a very good impression at NORD. We look serious!


« Last Edit: January 31, 2019, 08:58:32 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

b_jim

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Re: This may seem like a familiar place.
« Reply #2192 on: February 01, 2019, 01:25:21 PM »
Very nice !  8)
Taurine = Anti-Pois
Suffering from lyme disease

demografx

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Re: This may seem like a familiar place.
« Reply #2193 on: February 01, 2019, 01:30:28 PM »
Thanks, b_jim!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2194 on: February 01, 2019, 04:06:20 PM »

Many, many thanks again to everyone here who contributed your hard-earned fund$ to this new POIS Study!





« Last Edit: February 02, 2019, 08:44:26 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2195 on: February 01, 2019, 08:38:29 PM »


Our POIS Research Team


https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/

From NORD:

Dear Demo,

We are very pleased to tell you that NORD's Medical Advisory Committee has selected the following POIS research project for funding:

Principal Investigator: Tierney Lorenz, PhD
Institution: University of Nebraska-Lincoln
Project Title:  Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome

Congratulations!  We recognize that this has been a long journey for the POIS community and are so excited that this grant funding will be used to support Dr. Lorenz and her team in advancing the field of POIS research.

Research Administration
National Organization of Rare Disorders (NORD)





Dr. Tierney Lorenz, our Primary Investigator



Dr. Nicole Prause, our Co-Investigator




The POIS data will be collected at Dr. Prause’s lab (Liberos LLC) in Los Angeles, but both Dr. Lorenz and Dr. Prause will be analyzing it.
www.liberoscenter.com






« Last Edit: February 04, 2019, 04:50:13 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #2196 on: February 01, 2019, 09:15:27 PM »
Any ideas on who're the subjects?
Yes. Forum members. But let’s please not worry about it now. We’re in the *very* preliminary stages, nowhere near volunteer recruitment thinking or discussions.

Many thanks, Nas


« Last Edit: February 01, 2019, 09:24:47 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: This may seem like a familiar place.
« Reply #2197 on: February 04, 2019, 12:43:56 PM »
I think my last trial ever on POIS will be to up my Epinephrine production and if that did not work, I'll lower it. Otherwise, I'm going to stop, I have tried almost everything on this forum with little to no success. I might be coming to a conclusion that this illness is just untreatable, it's one of the most mind boggling, inconsistent and soul crushing illnesses that anyone can face, it is an absolute curse. In fact I've reached a point where I don't even know if the next research will find anything. We are eternally screwed and there is no way out of this.

demografx

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Re: This may seem like a familiar place.
« Reply #2198 on: February 04, 2019, 04:53:09 PM »
I can’t tell you how many times I’ve reached the same conclusion. But I just didn’t give up and I’m glad that I didn’t.

I will *never* agree with the statement, “we are eternally screwed and there’s no way out of this”. They said that about certain-death-sentence AIDS but now there’s life-saving treatment.

But I absolutely understand your sentiment. I’ve been there many, many times. It’s an inhuman disorder!


« Last Edit: February 04, 2019, 06:00:28 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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Re: This may seem like a familiar place.
« Reply #2199 on: February 04, 2019, 07:16:48 PM »
I can’t tell you how many times I’ve reached the same conclusion. But I just didn’t give up and I’m glad that I didn’t.

I will *never* agree with the statement, “we are eternally screwed and there’s no way out of this”. They said that about certain-death-sentence AIDS but now there’s life-saving treatment.

But I absolutely understand your sentiment. I’ve been there many, many times. It’s an inhuman disorder!
I respect your opinion but for me personally that'll be it.