Free Flow Discussion about POIS

[Bulbo]

Hello everyone
I am happy to tell u that there may be a way to cure pois and that it is not irreversible. I was always desperate to escape from pois hell. I think i may have found a solution. I was reading all the posts in NSF forum and i came across a member named Gcrisp, who developed POIS after 50 yrs when he was asked to take statins. Fortunately he was able to recover from pois after stopping statins and also after eating eggs daily  for a few months. Since i hv tried every other solutions and nothing worked, i started to eat eggs daily, i ate 2 eggs daily for a month and then i started to eat 3 eggs daily. I have been eating 3 eggs daily for 2 months 28 days. My pois was a type where i recover from tiredness within 2 days, but the pois hangover never lifts, it is always there. After eating eggs for 1 and half month my pois duration reduced to 3 days, then with each week pois duration reduced by 6 hours. Now my pois lasts for 1 day 13 hrs, i really hope as days go pois duration would get reduced even further.
I felt that i should share this information with u , becuase if i was in your place i would be desperate even for a little help.
It takes atleast a month to feel benefits of eating eggs. I dont know about the quantity of eggs to eat daily, but i feel very good by eating 3 eggs daily.
Please do read Gcrisp post on NSF forum for more details.

[demografx]

Dear Forum,

Dr Nan Wise here!

I am making significant progress interviewing some wonderful gentlemen who have already volunteered for the study.  These phone and SKYPE interviews have been giving the team lots of food for thought.  There is nothing like going into a deep, open-ended conversation to develop a more nuanced perspective on the syndrome.  Dr Barry and I have been discussing the information I have been gathering in these interviews--and how this relates to some of our ideas about the syndrome. 

The heart rate variability equipment has arrived. Dr Barry is becoming acquainted with the computer programs which analyze the output.  We should be ready by April to bring in some of the gentlemen who live locally to begin the lab-based part of the study.

Thank you for your patience.  I have tremendous respect for all of you and empathy for how much POIS affects your lives.

Warmly,
Dr Nan

          

[Quantum]

Hi to all POIS sufferers,

I invite you to take a few minutes and answer 3 short polls, on this forum, that will help the research team in having a more accurate vision of some aspects of POIS they asked about.  So, please, click on the following links, and add your input to these polls.  This will help everybody having POIS, you included !

If you want, you can contribute more than just answering the polls by adding more details in the reply/comments section of the polls.

So, here are the links for those 3 polls:

Poll #1, about onset of symptoms: http://poiscenter.com/forums/index.php?topic=2033.0

Poll #2 , about duration of symptoms: http://poiscenter.com/forums/index.php?topic=2034.0

Poll #3 , a survey on POIS symptoms: http://poiscenter.com/forums/index.php?topic=2035.0

Thank you very much for your participation!

Quantum

[Vincent M]

I got a message on reddit from a user there who created a POIS subreddit. Here's the link to it if anyone is interested:
http://www.reddit.com/r/POIS/comments/302j7v/discussion_general_pois_discussion_thread_if/

[G-man]

As fucked up as it sounds

Many of us (all of us?) were very sick in our childhood. And that called for a lot of antibiotics...

which may have opened the door for a number of malicious organisms to live in our intestines

and those organisms may be responsible for our symptoms

[Vandemolen]

I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.

[poiseidon]

What+if+there's+an+actual+infection.++many+of+those+who+undergone+desens+report+improvements+in+symptoms+but+issues+in+thee+prostate+later+on

[Starsky]

Vandemolen, i Think you are searching this :

FloppyBanana+ All,
Being in my late sixties i had( Benign Prostate Hyprotophy) you will all get it as you get older,where the Prostate expands and blocks the pee tube.had the standard operation to cut away part of the prostate to reduce the size of it and now can pee normaly, but the Urolgy guys found a very high level of Inflamation present in the prostate. This opperation has made no difference to Pois, i am now taking antinflamatorys before and after Pois as suggested by specialist, they help as did testoterone patches precribed by my local Dr,but are not the answer. I may now try Progesterone and Niacin,
M.R.I. scan of the brain seems to be the way forward ,a scan before Pois and one day after Pois  enableing Doctors to work backwords from the brain.
Regards to all . Lineman

[Vandemolen]

Thanks Starksky but it was a more recent post. In 2015.

[Quantum]

I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.

I agree, Vandemolen,  it sure fits with an allergy reaction ( hypersensitivity Type I ).  One of the well known effect of the histamine released by mast cells, when an allergy reaction occurs, is vasodilation.  All those blood vessels opening larger are responsible for all this blood rushing in. They are also immune messengers released that attracts white blood cells to the site. We all know about the redness, edema, pain and heat sensation at the site of a skin allergic reaction... these are the 4 main signs of inflammation.  They can occur as well inside the body - they're just less visible, as in the case of the prostate.

I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ).   I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.

[demografx]

Cross-posted from "How Does POIS Affect Your Dreams?"
http://poiscenter.com/forums/index.php?topic=1087.0



Once dreamt of 2 planets disastrously colliding, right after an NE.

Sure enough, 4 disastrous days of POIS followed!

[Andy451]

Myself and some others are Hoping to get a bunch of guys together for some online communication. If you would like to then, please msg me and we could go over the details and explore the idea further. Skype may be a starting point and then some conference calls of sorts. Eventually meeting in person at the study site or a major city would be optimal.

Thanks guys.

-- Andy

[Hoping]

I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.

I agree, Vandemolen,  it sure fits with an allergy reaction ( hypersensitivity Type I ).  One of the well known effect of the histamine released by mast cells, when an allergy reaction occurs, is vasodilation.  All those blood vessels opening larger are responsible for all this blood rushing in. They are also immune messengers released that attracts white blood cells to the site. We all know about the redness, edema, pain and heat sensation at the site of a skin allergic reaction... these are the 4 main signs of inflammation.  They can occur as well inside the body - they're just less visible, as in the case of the prostate.

I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ).   I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.

I've also noticed that it's more difficult to urinate while I'm symptomatic. I've never had my prostate checked. I didn't realize an inflamed prostate could be a sign of an allergy or auto immune response. That's fasinating!

[Quantum]

I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ).   I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.

I've also noticed that it's more difficult to urinate while I'm symptomatic. I've never had my prostate checked. I didn't realize an inflamed prostate could be a sign of an allergy or auto immune response. That's fasinating!

Hi Hoping,

The prostate is like a donut, circling the urethra tightly.  In bening prostatic hyperplasia (BPH) the prostate gets swollen, it compresses the urethra, so the urine flow is blocked or impared.  BPH is a chronic condition, present in many older men, but I have made the guess that it can be a temporary condition for POIS sufferers who have prostate inflammation among their symptoms ( and what you says seems to confirm that it indeed happens).  For a more visual explanation of what happens when the prostate is swollen, see at http://en.wikipedia.org/wiki/Benign_prostatic_hyperplasia#/media/File:Benign_Prostatic_Hyperplasia_nci-vol-7137-300.jpg .  This illustration is made for BPH , but it's the same thing in POIS, except it's not chronic.  Same symptoms as BPH should occur when prostate is swolllen during POIS,, like difficulty to urinate, poor flow, dribbling, going to the bathroom often ( because bladder not emptying completely), nocturia ( having to go to the bathroom many times during the night), and so on.

BPH is often treated safely with saw palmetto, which decreases prostate inflammation.  Interestingly, some members, like Cornelius and Vincent M have used saw palmetto with success for their POIS symptoms, and surprisingly, it seems to have helped with more than just difficulty to urinate and local prostate symptoms ( see at http://poiscenter.com/forums/index.php?topic=207.msg2536#msg2536 )

[demografx]

Myself and some others are Hoping to get a bunch of guys together for some online communication. If you would like to then, please msg me and we could go over the details and explore the idea further. Skype may be a starting point and then some conference calls of sorts. Eventually meeting in person at the study site or a major city would be optimal.

Thanks guys.

-- Andy

Great idea, Andy! I've seen several other forum members express interest in this. Demo

[Vandemolen]

Did someone try Amitriptyline (Elavil, Endep, Levate)? It is the most widely used tricyclic antidepressant (TCA). But they also use it for UTI and problems with the prostate. For depression you have to take 75 mg a day. The doctor gave me 10 mg a day. It didn't help. I read that people with prostate problems use 30 mg a day. So I am goinimg to try 20 mg a day and if it doesn't help 30 mg.

It might also help againt some symptoms of POIS. Because of this medicine your body makes more serontonin.

[demografx]

Daveman and I contacted NORD to get a copy of Dr. Komisaruk's first interim report (due ~ 6 months after start of study). It should be understood that these interim reports are extensive and in-depth. NORD's MAC reviews them for scientific information, merit and accuracy before approving them. This report was received at the end of April 2015, and approved by the MAC.

As you can understand, these reports are highly confidential until they are publicly published in a journal. But,  NORD includes a request for a brief summary that can be publicly posted.

Here's the public summary for the first interim report. It's written in general terms which is to be expected:

"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.

POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."

The NORD research grant administrator additionally advised --

"The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year due to some delays round receiving IRB approval for the study."

Daveman and I will request from NORD the next interim report, due at the end of October 2015.

Demo & Daveman

[demografx]

I just sent an email to Dr K, cc: Dr Nan Wise, copy/pasting the [below] 3 posts in the body of the email.

Email Subject line: "Incorporating POIS forum posts to augment your Study".

Dr Nan Wise's reply:

On Jun 17, 2015, at 4:58 AM, nanwise@psychology.rutgers.edu wrote:

"This is very interesting.  I will discuss this with the rest of the team!"






demografx
Administrator
Hero Member
Posts: 1929
Re: Allergy or neurological
« Reply #38 on: June 12, 2015, 06:22:04 PM »

Quote from: Colm on June 11, 2015, 03:41:25 PM

...I would assume the researchers are keeping in touch with these great
contributions on the forum here, and bringing the newest thinking into
their analysis...


I encourage you, Colm, and all,  to send an email to Barry or Dr Nan,
expressing your (Colm's) sentiments above. I think it's critical for at
least a Rutgers staffer to read/study/convey to all the POIS-Rutgers Team.

Thanks.

Report to moderator    104.172.245.112 (?)
Nearly POIS-free symptomatically, 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 associated with it.

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


demografx
Administrator
Hero Member
Posts: 1929
Re: Allergy or neurological
« Reply #39 on: June 12, 2015, 06:27:38 PM »

Timing is good since we are now collaborating on meaningful member
characteristics. Your postings analysis may prove an interesting part of
the study. Agree?

Report to moderator    104.172.245.112 (?)
Nearly POIS-free symptomatically, 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 associated with it.

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


b_jim
Sr. Member
Posts: 409
Re: Allergy or neurological
« Reply #40 on: Today at 01:20:42 AM »

I sincerely hope that searchers use our posts. There is more chance if a
large number of cases have the same observations.
For example whan we had 15... 20 and more Poisers improving symptoms  with
niacin.


Nan Wise, Ph.D
Certified Sex Therapist, AASECT
Assistant Research Professor, Psychology,Rutgers-Newark
Fellow, The American Psychotherapy Association
Fellow, The National Board for Clinical Hypnotherapists
Board Certified Diplomate, The American Board of Examiners in Social Work

[Quantum]

Happy Father's Day!

Thank you , Demo!

I am father of two children ( 20 y/o boy and 13 y/o girl ) that I am very proud of! 

I am very glad that POIS didn't keep me from having children.  They are two extraordinary persons, and they are are a huge source of happiness in my life :-))) 

Happy fathers day to every father of this board!

Quantum

[demografx]

A breakthrough in POIS brought to you by Daveman and demo. With Stef adding: "POIS Gains Popularity Around the World"

http://www.poisnoy.com/?author=1