Author Topic: A Miracle  (Read 1334 times)

POISPILGRAM

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A Miracle
« on: September 01, 2024, 04:59:54 PM »
I am 49 today.

ACT I: The Lost Soul

I have been battling debilitating POIS for roughly 20 years -- year after year the next more grueling than the one before -- will this truly go on forever....a truly living hell.  It has negatively affected every part of my life...including blowing up a number of romances, but not all. I never told my family or friends what I had, they just assumed I could be dramatic and extreme as I have always been one with an interesting character.

My symptoms have never changed and been the same throughout: grinding teeth, chills, extreme irritability/burn the house down type energy/kill everyone and therefor staying away from everyone, muscle tension, in ability to sleep easy the first night post, super dark, personally upsetting, and itching/aching circles ... and the worst of all, always brain fog and the absolute loss of my master cognitive and language skills -- that more than anything always leading me into rage -- I could literally feel myself not able to think or speak as I could before.  Full recovery time in the first decade was 3 days...it has since grown to 4/5 days.

For that first decade ... I literally had no idea what it was or what was going on. I would spend countless days and months researching what I clearly realized early on was directly tied to orgasm and no one on earth seemed to have this experience but me.  I would always dwell on the Hindu belief that men should not over orgasm in life ... and I still wonder about that. I further have always had a high sex drive ... so the idea of abstaining was never going to work for me ... I would have rather killed myself.

Early on I began self-medicating with GABA, Picamillon and 5-HTP (substances I was very familiar with and using long before POIS) in attempt to bring down what I could only assume was extreme cortisol spikes.   These substances were helpful but did not in anyway prevent the POIS attacks or my need to recharge.

ACT II: We Are Not Alone

In 2012  (at age 37) I discovered Dr. Waldinger's work randomly online one day (at https://sites.google.com/site/poiswebsite/home) and instantly knew this is what I had and it had a name: POIS.   I immediately wrote Dr. Waldinger and from that day forward I was at least happy I was not alone and that maybe one day, even in my lifetime, this could be reversed, healed or put into remission.

Knowing that I was not alone was immensely comforting and maybe powerful.  I began reading everything I could find on POIS and quickly realized it was truly a world of unknowns.  One day I read about something called RELORA -- and bingo -- it helped me immensely.  For at least the last 7+ years I have relied heavily on Relora (& oxiracetam) to dramatically mitigate my irritability post orgasm.  It has worked so well that it would allow me to go out even same day as long as I was taking enough and really wanted to go out.  Granted, I usually stayed home anyway because I was still greatly fatigued and knew I had to rest. I was not going to be my super bright self even with these trusted aides.

In the past four years I was visiting Dr. Kunst in the Netherlands for his autovaccine therapy, which sadly we were unable to fully complete due to his untimely death.  I then moved on to actually receiving antibiotic shots directly into my prostrate. F_ck off -- one of the most painful things I have ever done in my life -- and it did nothing for my POIS.   Note, this prostrate therapy does, however, help allot of couples conceive, because men often have allot of bacteria lurking in their semen preventing them from during their jobs ... it's not always the women guys. 

And lastly and important to this story, in the past two years, a close friend and yoga teacher told me about how he would often push super hard on his perineum to prevent any semen traveling up his urethra when he orgasms.  I thought this was a novel idea, so tried it and KABOOM --- no symptoms, no POIS of any kind --- and this confirmed for me once and for all, that in my case, POIS was clearly 100% allergy related. Now this pushing on the perineum method took some real work and exact timing, and you really did have to push hard because if even a few streams got through -- BOOM -- POIS attack.  Sometimes I failed to get there fast enough, etc, etc.  But the real benefit of this was I started diving back into the allergy research.

ACT III: SALVATION

About 12 months ago I learned about Mast Cell Activation Syndrome (MCAS) and the article out of Australia regarding a POIS patient being treated/cured with XOLAIR (https://onlinelibrary.wiley.com/doi/10.1111/imj.80_16230).  After quite a bit of research I deduced I had nothing to lose and wanted to try it too.  I am in the fortunate circumstance that I can travel worldwide for my healthcare and knowing it would be a painful process of dealing with the truly evil US health industry, flew to Turkey where there is a well-known urologist who is very active with POIS patients. He had not heard of this Xolair research, but also deduced it was worth a shot.

Ladies and gentleman, I had my first shot of Xolair (150mg) on July 31st, 2024. I had a second shot (35mg) on August 18, 2024.  Due to Xolair's half-life I intend to continue Xolair indefinitely at 75mg every 6 to 8 weeks with goal of maintaining a blood serum level of 25mg to 100mg.

I HAVE HAD NINE (9) ORGASMS SINCE MY FIRST SHOT OF XOLAIR WITH ABSOLUTELY NO SYMPTOMS OF ANY KIND -- 3 OF THOSE 9 IN THE LAST 6 DAYS -- I SHOULD BE A COMPLETE AND UTTER WRECK --- YET I AM NOT.  I have been walking around in complete shock and disbelief that this nightmare is literally over.  I can think fully and completely after all orgasms.  I am going to sleep just fine.  I am having no POIS symptoms at all.  This is how my life was BEFORE POIS.

I just had orgasm number 9 two hours ago with a divine women. I have written this piece without any cognitive issues at all -- this would have been utterly and completely impossible a month ago and for the better part of the last 20 years.

I urge everyone as a first line treatment to please research Xolair, its coming next gen competitors and MCAS.  For those with my cluster group in particular, please do not ignore this smoking gun.

The Gods are one thing ... science is another.     

I have no more to say.
« Last Edit: September 01, 2024, 05:22:39 PM by POISPILGRAM »

Hopeoneday

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Re: A Miracle
« Reply #1 on: September 03, 2024, 06:39:01 AM »
https://poiscenter.com/forums/index.php?topic=2684.msg27792#msg27792
Member  poisioq - elevated prolactin(elevated prolactin could be the couse of
hypogonadism in poisers),
Hi ige , igf1....-(indicate posible parasitic infection, alergic reactions....
Intresting, member reporting that in fasting periods he get rid of pois...
That olso lead me to(XOLIAR) indicated to alergic asthma and mcas patients...


UPDATE 5#

Since my last update I had 2 blood test. In both of them prolactin resulted into the limits.
But for my last blood test my doctor requested also 2 unusal things: IGF-1 and IgE, that both came up above their normal ranges:

IgE   562,00 UI/mL   (<120,00)
IGF-1   279,80 ng/mL   (96,40 - 227,80)

Update #2

After 2 months on Cabergoline I had another blood test. Now prolactine is in the range: 13 ng/mL [3.5 - 19.4].
In my last 2 analysis it was 55.9  and 41.5 ng/mL.


Hi, it is newer to late.
I am wery hapy that you manged to found cure for yourself.

Unfortunatly years are pasing and we are gaslighted by doctors
and ordinary medical comunity field.

Similar to US, i am in eastern EU, so if i go to eny doctor in regards of
pois, no mater if i showe pois studyes and papers, they all will send me
to psychiatrist! The same with my CF_ME.

I discovered this XOLIAR solution about 6 years ago!
Why specialists and doctors in hospitals and clinics cant???????
« Last Edit: September 03, 2024, 07:55:14 AM by Hopeoneday »
Dr-pois.

JayDeeSee

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Re: A Miracle
« Reply #2 on: September 03, 2024, 08:21:52 PM »
Can you give more info about this perineum method?

Gogo

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Re: A Miracle
« Reply #3 on: September 06, 2024, 03:40:14 AM »
Hello POISPILGRAM,

First of all, I'd like to congratulate you on all those long steps and efforts you had to take to find solutions to get better.

You say you went to Turkey to see a urologist who is very interested in POIS and who gave you omalizumab, is that right? Could you give me the name of this doctor and why not his contact details? I'm also looking to try this treatment, as I have POIS which incapacitates me a lot on a daily basis and I currently live in France.

Thank you for your help.

Hopeoneday

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Re: A Miracle
« Reply #4 on: September 08, 2024, 08:48:00 AM »
I think that enybody who hawe financies and health to trawell can
found some doctor, clinic, where can be given xoliar.
Even doctors who are on the list on this forum, check Quantum list of doctors.
« Last Edit: September 08, 2024, 05:30:21 PM by Hopeoneday »
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demografx

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Re: A Miracle
« Reply #5 on: September 08, 2024, 03:34:32 PM »

…Even doctors who are on the list on this forum, check Muons list of doctors.


Isn’t that Quantum’s list of doctors?
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

Hopeoneday

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Re: A Miracle
« Reply #6 on: September 08, 2024, 05:26:46 PM »
Hi Demo, where are you those days, how are you man?
Dr-pois.

demografx

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Re: A Miracle
« Reply #7 on: September 08, 2024, 05:33:25 PM »
All’s well, thank you, Hopeoneday. I’m now age 78, and still waiting with all of you in the forum - - since our humble beginnings in 2007 - - for a…….big POIS breakthrough!
« Last Edit: September 08, 2024, 05:40:46 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

Hopeoneday

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Re: A Miracle
« Reply #8 on: September 08, 2024, 06:06:12 PM »
I am glad to hear that, keep going man.
2007 , it was wery hard times for you seniors to aknowledge pois
to the world..I remeber my self thouse days, how i searched on net
what is goin on with me, to found eny info, person on the world with similar symptoms...
« Last Edit: September 09, 2024, 04:48:51 AM by Hopeoneday »
Dr-pois.

Quantum

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Re: A Miracle
« Reply #9 on: September 09, 2024, 08:34:03 PM »
Thanks, Poispilgram, for sharing your success with your POIS control method.
Since it looks like you have now been POIS-free for about 3 months, I added you as a reference member in a new section, #20, in my POIS Types Chart, at https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 .
I suppose that the urologist you saw in Turkey is Dr Serefoglu.  I contacted him a few times, throughout the years.  He is very dedicated to the POIS cause.  He is brilliant, and is a real gentleman.  He also speaks English very well.  He was one of the first Doctor that I listed on my POIS Doctors List, when I created it back in 2017  ( He is #2 on the list, for those who would see his contact information, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 )
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Quantum

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Re: A Miracle
« Reply #10 on: September 09, 2024, 08:39:54 PM »
Can you give more info about this perineum method?
Hi JDC, this method has been used by different members, with success, as long as it works perfectly, that is, with no leak.  See details in this thread: https://poiscenter.com/forums/index.php?topic=4322.0 .  It is listed as #19 in my Chart - see https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448

You can also watch this video for a detailed explanation of how to do it :  https://www.youtube.com/watch?v=MRflY59PXb0
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

JayDeeSee

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Re: A Miracle
« Reply #11 on: September 12, 2024, 12:41:58 PM »
Can you give more info about this perineum method?
Hi JDC, this method has been used by different members, with success, as long as it works perfectly, that is, with no leak.  See details in this thread: https://poiscenter.com/forums/index.php?topic=4322.0 .  It is listed as #19 in my Chart - see https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448

You can also watch this video for a detailed explanation of how to do it :  https://www.youtube.com/watch?v=MRflY59PXb0

So I tried this yesterday and wow what a difference! A few drops managed to get out so there are some very very mild symptoms, but it's hard to tell exactly how mild because I've already been feeling pretty crappy the last several days because a few big wildfires nearby have made our air quality really bad.

I definitely did have at least some retrograde ejaculation though since my pee was cloudy shortly after and then was clear after that first pee.

I feel like this confirms that this disease is caused by the seminal fluid itself. I want to keep experimenting, occasionally, with this method, however my concern is that it can't be too good for all the parts inside the body.

Sfougoss

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Re: A Miracle
« Reply #12 on: September 13, 2024, 05:18:43 PM »
I suppose that the urologist you saw in Turkey is Dr Serefoglu.  I contacted him a few times, throughout the years.  He is very dedicated to the POIS cause.  He is brilliant, and is a real gentleman.  He also speaks English very well.  He was one of the first Doctor that I listed on my POIS Doctors List, when I created it back in 2017  ( He is #2 on the list, for those who would see his contact information, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 )

 My brief exchange with that "Dr", unfortunately, is in contrast to yours. He was dismissive and rude from the get-go, to the point that if I was in his office and he used the same tone and had the same behavior he'd probably be the one in need of some treatment and not me...

Quantum

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Re: A Miracle
« Reply #13 on: September 15, 2024, 08:30:02 AM »
I suppose that the urologist you saw in Turkey is Dr Serefoglu.  I contacted him a few times, throughout the years.  He is very dedicated to the POIS cause.  He is brilliant, and is a real gentleman.  He also speaks English very well.  He was one of the first Doctor that I listed on my POIS Doctors List, when I created it back in 2017  ( He is #2 on the list, for those who would see his contact information, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 )

 My brief exchange with that "Dr", unfortunately, is in contrast to yours. He was dismissive and rude from the get-go, to the point that if I was in his office and he used the same tone and had the same behavior he'd probably be the one in need of some treatment and not me...
Sorry to hear that, Sfougoss.  We all have bad days, I guess.  I never met him in person, but he had been very helpful every time I contacted him.   It seems that the OP had a better experience than yours, leading to a good result with Xolair. 
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259