Author Topic: Free Flow Discussion about POIS  (Read 934181 times)

Spartak

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Re: This may seem like a familiar place.
« Reply #2060 on: April 02, 2018, 07:15:19 PM »
I would really like to help, but I don't know any of them :-X
Maybe only to check if there is some research team  in my country.
Demo since you 1st time posted suh a post, it is puzzling me a lot, but I still have no idea how to  contribute
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

demografx

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Re: This may seem like a familiar place.
« Reply #2061 on: April 02, 2018, 07:36:11 PM »

...I still have no idea how to  contribute.


Spartak, you’re contributing mightily just by posting and keeping the forum alive!

$ donation$ are suspended, for now.

Let’s all just keep thinking - - along with NORD, our POIS Grant Administrator  - - to whom we might send the invitation to study POIS.

We can offer up to the $31,000 already raised by POISCenter members!
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

If any forum member would rather someone else send an e-mail (from me or another admin/moderator) please just post your idea - here, at this thread - as to *who* might be good for us to send to (please try to provide the e-mail address of the doctor or researcher whom you recommend).

Or, if you prefer, you can also send your recommendation by PM (private message) to myself, or Quantum, or Observer, or COLM.

Thank you all for making this a STRONG rare disorder forum!
« Last Edit: April 02, 2018, 11:56:16 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

Meshal

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Re: This may seem like a familiar place.
« Reply #2062 on: April 07, 2018, 10:46:05 PM »
I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed  (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.

I would love to update on this

Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.

Quantum

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Re: This may seem like a familiar place.
« Reply #2063 on: April 08, 2018, 07:51:21 PM »
I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed  (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.

I would love to update on this

Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.

Hi Meshal,

Sorry to hear that POIS is a real hindrance for your studying.   

About NE, do you keep some pack or some anti-POIS supplements ready, on your bedside table, with some water, in order to take as soon as you realize that you had a NE?   

I do keep a pack, always, on my bedside, with water, and taking it when I have a NE helps to lower the symptoms I would get from the NE.  I am now quite use to do that, and have always water with a pre-pack, all ready on my bedside.   My mind is sort of use to this routine now, because I usually wake up after having a NE, and I then take my pack right away, and I get up to wash myself and change cloths, and urinate, too, to rinse out any semen leftover, then I go back to sleep. ( I urinate because the exact reason why ejaculation triggers POIS is not known, and semen contact somewhere in the urethra cannot be ruled out with current knowledge about POIS, so this is a "security measure".  If POIS is triggered by  neurologic/neurotransmitter unbalance, this would prove to be useless, but for now, we don't know, so I do it, because it does not cause me any problem to urinate after a NE.)

POIS symptoms are significantly lower for me if I take my pack after a NE, than if I don't.    So, for example, if you have some anti-POIS you know are good for helping you, whatever it is ( anti-inflammatory, antihistamines, natural products, ....) , i suggest you have a dose fo them ready  with some water on your bedside, every day, in order to take it as soon as you know you had a NE.  This could help you a lot with your problem of POIS interfering with your studying.

I hope this will help a bit, Meshal.
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

demografx

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Re: This may seem like a familiar place.
« Reply #2064 on: April 09, 2018, 06:49:49 PM »

I already prepared an email to a lot of doctors in my country...




Thank you very much, Meshal!!


« Last Edit: April 09, 2018, 06:55:36 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 #2065 on: April 09, 2018, 06:50:46 PM »



To all: feel free to use this email as a “template” to send to your own doctor or to your favorite researcher!

Subject: $31,000 Grant to study POIS

On Feb 28, 2018, at 6:41 PM, demografx wrote:

Dear Dr Goldmeier,

I hope you’re well. I have been moderating POIS forums for 10 years.

You and I chatted briefly via email, then I think one or two of our members visited with you at your office.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached our $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Best wishes,

Demografx
Administrator
POISCenter.com

ps - please visit our forum!
http://www.poiscenter.com/forums/index.php
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

Meshal

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Re: This may seem like a familiar place.
« Reply #2066 on: April 19, 2018, 02:31:05 AM »
I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed  (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.

I would love to update on this

Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.

Hi Meshal,

Sorry to hear that POIS is a real hindrance for your studying.   

About NE, do you keep some pack or some anti-POIS supplements ready, on your bedside table, with some water, in order to take as soon as you realize that you had a NE?   

I do keep a pack, always, on my bedside, with water, and taking it when I have a NE helps to lower the symptoms I would get from the NE.  I am now quite use to do that, and have always water with a pre-pack, all ready on my bedside.   My mind is sort of use to this routine now, because I usually wake up after having a NE, and I then take my pack right away, and I get up to wash myself and change cloths, and urinate, too, to rinse out any semen leftover, then I go back to sleep. ( I urinate because the exact reason why ejaculation triggers POIS is not known, and semen contact somewhere in the urethra cannot be ruled out with current knowledge about POIS, so this is a "security measure".  If POIS is triggered by  neurologic/neurotransmitter unbalance, this would prove to be useless, but for now, we don't know, so I do it, because it does not cause me any problem to urinate after a NE.)

POIS symptoms are significantly lower for me if I take my pack after a NE, than if I don't.    So, for example, if you have some anti-POIS you know are good for helping you, whatever it is ( anti-inflammatory, antihistamines, natural products, ....) , i suggest you have a dose fo them ready  with some water on your bedside, every day, in order to take it as soon as you know you had a NE.  This could help you a lot with your problem of POIS interfering with your studying.

I hope this will help a bit, Meshal.

Hey, I use beets and vitamin D3 for now. But when I come to think of it I don't take them until after day or two since I had NE.
Because I was barely able to move after the NE, I tend to delay taking them, maybe taking them as soon as I get the NE can lower the symptoms, I have to make this as a habit. thanks for the tip :D

Meshal

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Re: This may seem like a familiar place.
« Reply #2067 on: April 19, 2018, 02:34:56 AM »
I've been thinking lately about the nature of the symptoms, how can they vanish in a period of time just like that? what's happening exactly for them to just fade away?
Is the body building vitamins again? I just don't get it. Is there an scientific explanation for this?

I'm thinking maybe there is a disease out there that does have symptoms that are probably different symptoms, but they might fade away just with the same way our symptoms fade away, maybe something could be learned from the answer to this question.

dopamine

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Re: This may seem like a familiar place.
« Reply #2068 on: April 19, 2018, 03:21:37 AM »
I'm thinking maybe there is a disease out there that does have symptoms that are probably different symptoms, but they might fade away just with the same way our symptoms fade away, maybe something could be learned from the answer to this question.

Meshal check out this thing called "PFS" post finasteride syndrome on another forum called hackstasis. https://hackstasis.com

Some reckon they could be similar symptoms due to finasteride (propecia) which is similar to that of overmasturbation....the admin there (gbolduev) reckons it results in progesterone hypersensitivity

demografx

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Re: This may seem like a familiar place.
« Reply #2069 on: April 20, 2018, 09:35:52 AM »
Following is a private message posted here with fernab’s permission.


I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.


Hi, fernab!

Thank you for your interest in helping to distribute our RFP!

Best regards,
Demo

cc: POISCenter Admin Team

UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!

Any forum member can (please :) ) send this RFP out to your own doctor and/or researchers:
https://tinyurl.com/y96dnkmq



« Last Edit: April 20, 2018, 01:13:02 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

Observer

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Re: This may seem like a familiar place.
« Reply #2070 on: April 20, 2018, 10:22:13 AM »
Following is a private message posted here with fernab’s permission.


I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.


Hi, fernab!

Thank you for your interest in helping to distribute our RFP!

Best regards,
Demo

cc: POISCenter Admin Team

UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!

Any forum member can (please :) ) send this RFP out to your doctor:
https://tinyurl.com/y96dnkmq


Excellent demo, everyone who is going to a doctor right now should consider to send the RFP to him/her.
« Last Edit: April 20, 2018, 01:08:45 PM by demografx »

demografx

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Re: This may seem like a familiar place.
« Reply #2071 on: April 20, 2018, 12:58:34 PM »

...everyone who is going to a doctor right now should consider to send the RFP to him/her.


Yes! Thank you, Observer!



RFP link to send to YOUR doctor:
https://tinyurl.com/y96dnkmq


« Last Edit: April 26, 2018, 02:49:27 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 #2072 on: April 24, 2018, 10:58:11 AM »

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7
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 #2073 on: April 26, 2018, 11:36:09 AM »

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7

Here is the link to NORD’s email about the reminder:
https://conta.cc/2K7jLlr
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

certainlypois2

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Re: This may seem like a familiar place.
« Reply #2074 on: April 26, 2018, 04:25:08 PM »
Does anyone know how i can go about checking if pois is doing permanent damage to the brain.
I have done a normal mri scan and nothing was found. I am curious if there is special mri. Do MS patients do a special mri or normal one.

demografx

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Re: This may seem like a familiar place.
« Reply #2075 on: April 27, 2018, 06:38:07 PM »
I sent this out today to my GP (who is influential. He was the Chief Medical Officer at the Olympics Games)

Dear Dr G,

I hope you’re well.

I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.

Perhaps you can help me with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.

Any feedback from you, Dr G, to help this along would be GREATLY appreciated!

Best wishes,

[demo]
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx



« Last Edit: April 27, 2018, 08:04:44 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

Muon

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Re: This may seem like a familiar place.
« Reply #2076 on: May 03, 2018, 09:50:35 AM »
I did send out emails to multiple doctors but got no response from any of them. Well...at least I tried.

fernab

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Re: This may seem like a familiar place.
« Reply #2077 on: May 03, 2018, 03:29:09 PM »
The research department I contacted last week on a medicine university told me today, that after analysing the information (RFP). They will not apply because they research for rare diseases related with the mutation of only one gene (monogenetic deseas). According to them these diseases represent the 80% of all rare diseases. And POIS is not due to a gene mutation.

Seems finding a researcher it's not going to be easy...

Muon

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Re: This may seem like a familiar place.
« Reply #2078 on: May 03, 2018, 03:59:07 PM »
And POIS is not due to a gene mutation.

We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation  :o

demografx

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Re: This may seem like a familiar place.
« Reply #2079 on: May 03, 2018, 11:33:48 PM »

I did send out emails to multiple doctors but got no response from any of them. Well...at least I tried.


Thank you, Muon!

But don’t give up hope. The doctors who did not respond to you might still respond to NORD! That happened to me once. I was very pleasantly surprised.


« Last Edit: May 03, 2018, 11:49:23 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