Author Topic: Free Flow Discussion about POIS  (Read 582802 times)

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Hero Member
  • *****
  • Posts: 1020
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Hero Member
  • *****
  • Posts: 1072
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
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

  • Hero Member
  • *****
  • Posts: 1072
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.

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5244
  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #2200 on: February 04, 2019, 08:57:39 PM »
I respect your opinion but for me personally that'll be it.
Likewise, Nas, I respect yours.


« Last Edit: February 05, 2019, 01:50:11 AM 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

nanna1

  • Sr. Member
  • ****
  • Posts: 349
Re: This may seem like a familiar place.
« Reply #2201 on: February 05, 2019, 05:30:27 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.
Epinephrine controls heart rate. If your heart rate is normal or high then epinephrine will not work for you and could make your POIS worse. My advice is that you measure your resting heart rate and blood pressure first before experimenting with catecholamines. Heart rate is an indirect yet effective way of measuring epinephrine and norepinephrine.
« Last Edit: February 05, 2019, 05:32:28 PM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Nas

  • Hero Member
  • *****
  • Posts: 1072
Re: This may seem like a familiar place.
« Reply #2202 on: February 05, 2019, 06:05:38 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.
Epinephrine controls heart rate. If your heart rate is normal or high then epinephrine will not work for you and could make your POIS worse. My advice is that you measure your resting heart rate and blood pressure first before experimenting with catecholamines. Heart rate is an indirect yet effective way of measuring epinephrine and norepinephrine.
Good idea, I'll test my heart rate after Orgasm and see. I normally get low blood pressure after Orgasm, I'll also try to check that.

Gabin

  • Newbie
  • *
  • Posts: 22
Re: This may seem like a familiar place.
« Reply #2203 on: February 06, 2019, 08:02:29 AM »
Hello guys,

Would like to share a recently published paper on new technique deleloped at Johns Hopkins university for measuring brain inflammation in people suffering with post-Lyme disease syndrome and specifically from brain fog:

New scan technique reveals brain inflammation associated with post-treatment Lyme disease syndrome

https://m.medicalxpress.com/news/2019-02-scan-technique-reveals-brain-inflammation.html

Believe application of such technique might be curious in our case.

Nas

  • Hero Member
  • *****
  • Posts: 1072
Re: This may seem like a familiar place.
« Reply #2204 on: February 06, 2019, 08:46:54 AM »
Very interesting I wonder if we can test for Translocator Protein through blood serum?