POISCENTER

General Category => General POIS Discussions => Topic started by: Daveman on January 12, 2012, 11:50:35 AM

Title: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on January 12, 2012, 11:50:35 AM
We wish to provide a one stop orderly summary of POIS for both outside researcher as well as new and potential future members.

We wish to compile information from all our diverse sources, which have been developed over the last 5 years. As you know the NSF forum was organized as a one thread forum, so some information is deeply buried, and most of it not very organized, however there exists a treasure chest of highly detailed and relevant information there.

There are other sources like the POIS Compendium, surveys that have been developed over a large period with excellent demographic profiles, a collaborator data base, vsarious lists of user symptoms and medication attempted with corresponding results.

The first attempt will be to compile and summarize our experience. A second pass will produce formated relational databases which will allow us to find and compare characteristic.

This thread is to receive and process suggestions and solicit help in the processing and organization of this information.

A parallel thread will be created for a formal documentation and summary of the information.

The goal is to provide to you, the opportunity to help assure that the future of POIS will be resolved with the best of possible available information on the subject.

The actual generation of the format and documentation of the Summary thread will be undertaken by a committee of hopefully 3 volunteers plus Demo and I, to help assure that no decision is seen to be "personal". We will accept any volunteer applications by PM. The accepted volunteers will have moderator access to this category.

Thank you
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mellivora on January 12, 2012, 05:26:53 PM
Great Daveman, thanks,

SOME THOUGHTS:

INTRODUCTION:
I think for an introduction to the condition, Dr Waldinger's summary here is a good, brief description of what POIS is:

http://post-orgasmic-illness-syndrome.com/en/pois.html

We could use this for the basis of our own summary, adding our own collective experience to modify some sections. There is the summary in the POIS compendium too.

Some initial comments on the summary as Dr W has written it:

-"a medical disorder that only affects males" We have had one or two women complaining of similar symptoms after O on NSF. We could mention this although its clear that the sex ratio on this forum(SMF) is 1:0 M:F and of course the symptoms in the women could well have a different cause/ be later categorised as a different condition.

- It could be worth pointing out that its often perceived that we have 2 broad categories of people. Those who suffer mainly cognitive symptoms and those for whom physical symptoms (aches/pains) are a major issue. (the compendium does this). There seems to be a whole spectrum of severities and symptom mixes though so we need to look at the wording of this carefully to ensure we're being accurate.

- "The complaints last 2-7 days" -Its clear in some people that symptoms can last longer than 7 days so we should extend this (one of our polls shows this and I have experienced it myself in the past) or at least put something like 'most commonly' 2-7days.

Other things we need to summarise:

POIS RELIEVERS
Summary of things that have relieved POIS in sufferers and an idea of the overall success rates of these things.  (eg Niacin, Fenugreek, Testosterone). The success rates of most of these things could be summarised in two or three sentences. If we can get statistics on the number of people that have tried a given thing and the range of relief (as an estimated percentage/range of percentages) experienced by those people that would be good. We are some way towards this with Niacin. (However it can be tricky to separate such figures out as people are trying several things at once). Then we could give a link to more detail as required/if possible. Eg for Niacin we have an initial (and still evolving) collection of people's trials and experiences here: http://poiscenter.com/forums/index.php?topic=235.0


POIS AGONISTS (things that people have reported make symptoms worse)
There doesn't always seem to be  common ground here between sufferers but collecting data on this from forum members and summarising it would be really interesting I think. Things that have been mentioned in the past include stress, lack of sleep, carbohydrates, sugar. If possible,  lets try to find out what proportion of people are affected by each of these and other reported agonists.

SYMPTOMS IN MORE DETAIL
We could summarise the prevalence of symptoms as percentages. If so, we should state the number of sufferers that were included in working out the percentages for each symptom:

eg.
Brain fog/impaired cognitive function: 95% ( out of 80 sufferers)
Mental tiredness: 90% (out of 80 sufferers)
Joint aches 50% (out 60 sufferers)
(OBVIOUSLY I'VE MADE THESE FIGURES UP FOR SAKE OF EXAMPLE).

Ideally we'd have the same sample size (number of people surveyed) across all symptoms but depending how we manage to collect the data (eg old forum posts and questionnaires or new survey) this might not always be possible.

POSSIBLE CAUSES OF POIS:
Summary of existing theories (semen allergy/ autoimmunity etc)


PEOPLE KNOWN TO HAVE WORKED ON POIS
ie. Waldinger, Goldmeier etc with a list of their publications on POIS.

So my initial thoughts - and no doubt this will evolve with time and contributions from others

-SUMMARY OF POIS (similar to Dr Waldinger's above)

-PREVALENCE OF EACH SYMPTOM AS A PERCENTAGE OF SUFFERERS (this could be a link from the main summary if its too unwieldy)

-POIS RELIEVERS - things that have helped people (with an idea of how successful each is)

-POIS AGONISTS - things that make POIS worse with an idea of the prevalence of each (ie an idea of how many people report this)

-POSSIBLE CAUSES OF POIS

-PEOPLE KNOWN TO HAVE WORKED ON POIS (Waldinger, Goldmeier etc) with a list of their publications on POIS.

These summaries should be concise, clear and accessible.The more we can stick to facts and objective summaries rather than individual perceptions the better. We should be able to back statements up with real data where possible. Any detailed elaborations / breakdowns of data should be in separate sections that are linked to from the summaries rather than being part of the main body of the summaries otherwise we risk losing/diluting the main points and the readability of the documents will suffer
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on January 12, 2012, 06:48:16 PM
That's a pretty good start, thanks Mellivora,

My suggestion is that we take a bit of time to mosey on around NSF, and maybe the Compendium and start remembering bits an pieces that were key at the time.

I wnt back to page 10 of NSF, looking for B_Jims the list of user profiles. That was back in 2007, and on post leads to another and you can begin to see the beginning of history.

I think a casual walk around NSFs past will stir up lots of memories and help to stimulate the formulation of key points for our summary.

Also we have papers and general "theoretical directions" we can reference from about 6 different specialists.

Although we have our theories on what POIS is, I would like our summary to be as open as possible, yet informative.
Title: POIS SUFFERERS BY COUNTRY
Post by: mellivora on January 12, 2012, 06:59:10 PM
A suggestion: We don't want to bias research activity to/ confine it within one country or other but I think it would be useful for researchers to know the distribution of known cases of POIS. We have attempted to show this using maps in the past and I started a thread on this elsewhere a while ago.

I've tried to think of the most basic system to make this data easier to collect. How about we just do a simple list of countries and the number of POIS sufferers (in this case forum members) in each country. Please post your country of residence in reply to this and I will update this post with the totals. I'll start with myself which makes one for the UK as I have posted below. I'll add other countries and update figures as you post them.

(If there is any reluctance amongst members to post their country of residence it would be good to know this. We haven't had too many people identify their countries in the past but my impression is that most people wouldn't have a problem doing this, its just that they happen not to have answered past attempts to collect this data).

One more thing: Since this thread will hopefully get replied to a lot, it may appear frequently as the most recently updated thread in this section (i.e.'What is POIS' )of the forum.  I don't wish for it to distract from Daveman's important main thread which he meant to be the focus of this section so please ensure you have also visited that here:
http://poiscenter.com/forums/index.php?topic=299.0


ARGENTINA: 1
AUSTRIA: 1
CANADA: 1
CHILE: 1
DENMARK: 1
FRANCE: 2
GERMANY: 1
INDIA: 1
ISRAEL: 1
ITALY: 2
NEPAL: 2
NETHERLANDS: 2
SPAIN: 2
U.K.: 4
UKRAINE: 1
UNITED ARAB EMIRATES: 1
U.S.A.: 10
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Habibou on January 12, 2012, 07:11:44 PM
France
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: badgerstripe on January 12, 2012, 07:24:11 PM
U.K.
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Vincent M on January 12, 2012, 08:21:20 PM
United States
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: victor.kons on January 12, 2012, 10:50:51 PM
Ukraine
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: b_jim on January 13, 2012, 04:15:05 AM
France
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: mellivora on January 13, 2012, 04:54:07 AM
Based on some other posts on the forum I have added the following folk to the data:
B_Daniel: USA
Daveman: Chile
Demografx: USA
EDS: USA
Nightingale: USA
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Vandemolen on January 13, 2012, 06:26:52 AM
The Netherlands.

Another member of NSF already made a list where the members are from:

http://sites.google.com/site/poiswebsite/pois-map
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: mellivora on January 13, 2012, 07:01:34 AM
Thanks Vandermolen,

I knew about the map but couldn't remember the link. I certainly don't mean to fly in the face of similar work that has been done before or double up on work already done. I acknowledge that the map and graph on the link is a great visual tool.

However I would like to attempt to get data from more people. The map has 28 people listed.  To date, there are 111 people who are members of this forum and we know there are more POIS sufferers out there. It will also be good to get all this information in one place.

Also, it would be useful for future researchers to be aware of who is in which country, even if this is by anonymous forum names. This at least gives a future option of researchers being able to contact members via the forum to make people aware of their research and recruit them for a study. Who wouldn't want to be contacted to be involved in a study or at least be told of one happening in their country? By knowing our distribution in terms of forum usernames as well as just numbers, we potentially give ourselves an improved facility for helping recruitment onto research projects in the future.
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Observer on January 13, 2012, 07:34:31 AM
Spain here!
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Daveman on January 13, 2012, 10:03:27 AM
The Netherlands.

Another member of NSF already made a list where the members are from:

http://sites.google.com/site/poiswebsite/pois-map


Thank you Van. We also intend to link in more of the Compendium (http://sites.google.com/site/poiswebsite/), thank you.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: fsol on January 13, 2012, 10:33:56 AM
Denmark.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: aalkaff on January 13, 2012, 01:37:37 PM
United Arab Emirates
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Hoping on January 13, 2012, 01:50:16 PM
United States
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: Daveman on January 13, 2012, 02:20:11 PM
The Netherlands.

Another member of NSF already made a list where the members are from:

http://sites.google.com/site/poiswebsite/pois-map


The chart below (double click to enlarge) is from the site mentioned. Good work guys.

As they mention on the site, it may well reflect internet access demographics more than a reality of POIS distribution, but at least we can see on the map where our "brothers" reside. Comforting somehow!

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mat780 on January 13, 2012, 05:12:12 PM
Argentina.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ze80 on January 13, 2012, 08:27:54 PM
Austria
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on January 13, 2012, 09:04:09 PM
USA

so we need and african and east asian.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on January 14, 2012, 05:50:07 AM
It's good to see responses, thanks.

This weekend, I'll be taking a buzz around NSF, rather than just look at the last posts, and I'll try to come back with a sort of outline of a summary, which I'll post here.

But keeping in mind that this is a place where newbies and researchers alike will be coming for something clear and concise, this thread will just be the work area. We throw around ideas a bit, suggest important things to be included in the summaries, maybe special high lights etc.

From all that, our committee will start to summarize. As we see the summary being completed, we'll probably do a clean up of this work area, for instance, as we have complete data of country of origin, we'll resume it all in a separate thread and remove it from the work area.

What we leave and remove from the work area will depend. Sometimes it's good to see the development of a concept or discussion, and so those can be left, but pure data would be best to be cleaned up.

Hopefully it will become clearer as we progress.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on January 17, 2012, 07:41:39 AM
One thing we need is a good treatment summary which includes for each item a "proven" protocol for its consumption.

Please can we start noting any that we can think of, like niacin, fenugreek, etc.

Note here in this thread.

Post a summary for the item or at least a link to where one can be found. We will take care of organizing everything and putting it into a clear clean summary in the "What is POIS" section.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: MrMoonJr on February 01, 2012, 09:15:11 PM
2x 610mg Fenugreek, With Green tea. After a big meal.

Canada!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Quasar on February 07, 2012, 02:12:13 PM
I'm from Spain. So now we are 2 members from Spain.

I take 100mg Niacin before having an "o". And also daily multivitamin with probiotic helps me a little.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: poisioq on February 10, 2012, 07:36:42 PM
Italy
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: artist on February 11, 2012, 08:34:47 AM
The Netherlands
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: mandark on March 05, 2012, 03:00:05 AM
Nepal
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: eur79m on March 05, 2012, 09:38:31 AM
Germany
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: dexter on March 08, 2012, 05:24:46 AM
Nepal here!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: vetrofragile79 on March 15, 2012, 08:41:00 PM
 Italia
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: superasn on March 29, 2012, 06:59:46 AM
India
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mellivora on April 02, 2012, 04:01:11 PM
OK, I've updated the list. Please continue to post your country of residence here everyone so we can get an idea of where everyone is for any research programs in the future (list of countries with number of people from each (that we definitely know about) is part way down this page:

http://poiscenter.com/forums/index.php?topic=299.0

Thanks
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: pep on April 06, 2012, 12:56:06 PM
       SPAIN                 SPAIN                 SPAIN                 SPAIN                 SPAIN                 SPAIN                 SPAIN                SPAIN
city: Barcelona
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Bulls eye on April 08, 2012, 05:45:15 AM
Egypt
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: moe on April 10, 2012, 06:19:18 PM
Sudan
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on April 10, 2012, 08:56:27 PM
looking at the results, i dont think this is an enviromental thing, it is definately leaning more to genetics.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Bulls eye on April 11, 2012, 09:11:52 PM
it could be more common than we think , but people dont talk about it as its a very personal matter
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Shaniliyl on June 13, 2012, 04:40:35 AM
2 from Sri Lanka with POIS
i'm female and i have pois and other one is my guy :( wanna get rid of this shit
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on June 14, 2012, 08:59:21 AM
WOW,, we see very few females with POIS, although we've heard of it.

What are the symptoms? Are they the same in both of you? When did it all start? Has it always been "as a couple" or have you each had it separately?

There are probably a million questions.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on June 14, 2012, 12:42:45 PM
2 from Sri Lanka with POIS
i'm female and i have pois and other one is my guy :( wanna get rid of this shit
not only rare to find a woman with pois but her partner also has it is super rare.
not to be outward,in additon to your symptoms.
do you get the symptoms when you orgasm by yourself. Does he get the symptoms when he orgasms by himself.  just trying to rule out any relationship between your symptoms.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Observer on June 14, 2012, 04:27:33 PM
2 from Sri Lanka with POIS
i'm female and i have pois and other one is my guy :( wanna get rid of this shit

When did you get the POIS symptoms? At the same time? Do you suspect that something external is involved ? Your case is very interesting. We´ll help you.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: vonstermommy on July 29, 2012, 01:58:38 AM
San Francisco CA
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: kurtosis on July 29, 2012, 08:24:35 AM
Ireland
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: amijgoro on July 29, 2012, 05:22:50 PM
Israel
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Shaniliyl on July 31, 2012, 10:53:59 AM
WOW,, we see very few females with POIS, although we've heard of it.

What are the symptoms? Are they the same in both of you? When did it all start? Has it always been "as a couple" or have you each had it separately?

There are probably a million questions.

2 from Sri Lanka with POIS
i'm female and i have pois and other one is my guy :( wanna get rid of this shit
not only rare to find a woman with pois but her partner also has it is super rare.
not to be outward,in additon to your symptoms.
do you get the symptoms when you orgasm by yourself. Does he get the symptoms when he orgasms by himself.  just trying to rule out any relationship between your symptoms.

Sorry for late reply. Yeah I and my guy both have same symptoms. We are really fighting with this and fed up :(. Our symptoms are extreme fatigue, muscle pain, back pain, neck pain, tiredness of heart, emptiness, dull sad feelings, memory difficulties, cannot concentrate (specially when it comes to studying), loss of appetite, burning eyes and pain in eyes, itching eyes, loss of hair, extreme headache, incoherent speech (cannot pronounce words correctly and feeling like memory is not working properly), depressed mood, vision problems, flabby legs and hands, joints pain, feeling very tired and lazy, skin gets sensitive and etc. All of these symptoms begin after ejaculation and last for about week or more. In the meantime if we ejaculation again, the symptoms are increasing. As long as we don?t ejaculate our symptoms are passing off little by little with the time. After ejaculating we can be happy only few hours, then we begin to feel symptoms and feeling upset of it and sick of life. These really affect us in a bad way.
And the special thing is did anyone notice your face is changing? We both have that thing too. Our mature look is reducing within a few hours after ejaculation. Our face is not clear like normal people till 4-5 days. Yes I get the symptoms when I orgasm by myself and he gets the symptoms when he orgasms by himself.
These symptoms started for my guy when he was 15 years old. But I don?t know when these really started for me. My guy was the one who found that I also have this thing. Before, we thought only he has this shit. (We called it ?Over?). Then we started to notice my symptoms too. We did search internet and I found you tube video about POIS and then I saw this forum link in the comments section.
I have lot of questions and really wanna get rid of POIS. And another thing is Sri Lankan doctors don?t know about POIS. My guy went to few doctors and they thought he has depression and gave medicine for depression. They don?t believe our symptoms. So no help from Sri Lankan doctors too.

We are afraid of our future. But since we both have this thing, we can share everything and it?s a big relief  :)


Please tell if someone has that face changing effect. Please!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 31, 2012, 01:12:31 PM
Yes, I was noticing just the other day, that I get all puffy around the eyes and the skin get's, like thicker, as though it is slightly swollen.

That goes with my watery eyes, and I even have it a little when niacin removes the rest of my symptoms.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: vonstermommy on July 31, 2012, 01:28:05 PM
Wow  Shanillyl - those are alot of aches and pains! Have you tried Niacin?  If not, run, not walk to your local vitamin place or order online - not sure what is in your country! You may have doubt and think how could this random vitamin help us?  I pass this advice onto both of you as it was in this forum that we found out about niacin.

Its also a common theme that doctors give POIS sufferers an antidepressnt for your "mood."  The only thing our doctor prescribed that helped was maxalt - drug for migraines or bad headaches.  As usual, this helps the symptoms and not a cure. Urologist, Sex therapist, Neurologist...nothing.

Im so sorry.  Hang in there!

V from California
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on July 31, 2012, 04:00:01 PM
my face is not as smooth, clear or soft in pois as it is outside of pois. Been noticing that for a while now.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Shaniliyl on August 01, 2012, 12:26:27 AM
Yes, I was noticing just the other day, that I get all puffy around the eyes and the skin get's, like thicker, as though it is slightly swollen.

That goes with my watery eyes, and I even have it a little when niacin removes the rest of my symptoms.



We will try Niacin. Did u take 300mg per day? Plz give some instructions.

We have sleeping problems too. if we ejaculate few days continuously, we have to spend some sleepless horrible nights it it recover. It is really painful... Need to sleep but cannot. Burning eyes and pain in eyes with tears. Headache... did u have that too?

I have another problem. I'm a Restrictive Cardiomyopathy patient.. still in early stage. It's also a rare disease which is no cure yet. So there are some medicine which are not good for me. I don't know what are they. So first of all i have to check whether Niacin is okey for me or not. however my guy can take them, he has no such problems.   
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Shaniliyl on August 01, 2012, 12:56:28 AM
Wow  Shanillyl - those are alot of aches and pains! Have you tried Niacin?  If not, run, not walk to your local vitamin place or order online - not sure what is in your country! You may have doubt and think how could this random vitamin help us?  I pass this advice onto both of you as it was in this forum that we found out about niacin.

Its also a common theme that doctors give POIS sufferers an antidepressnt for your "mood."  The only thing our doctor prescribed that helped was maxalt - drug for migraines or bad headaches.  As usual, this helps the symptoms and not a cure. Urologist, Sex therapist, Neurologist...nothing.

Im so sorry.  Hang in there!

V from California


Hey V,

Yeah V :( these symptoms make our lives so hard. not i didn't try Niacin. plz refer to my reply for daveman. My guy going to try them and then if also expecting to try if it's ok for my heart case. I also have a discharge infection... took medicine 4 times and still didn't heal. I think it didn't cure because of pois. as i think, the medicines don't work for infection because of pois.  I'm really depressed with that too. so can u imagine how hard time I'm spending with all of these. Luckily I found my true love. whatever happens he is with me. :)
How is your case(pois)? , thanks for reply, Will keep in touch V :)

Shani from Sri Lanka.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Shaniliyl on August 01, 2012, 01:01:31 AM
my face is not as smooth, clear or soft in pois as it is outside of pois. Been noticing that for a while now.

oh is it, I have got pimples too and itching face. those will last for about 2,3 days. not pimples but itching face.
Thanks for your reply. :)
Hope we can find some cure soon...  ???
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on August 01, 2012, 08:21:47 AM
Yes, I was noticing just the other day, that I get all puffy around the eyes and the skin get's, like thicker, as though it is slightly swollen.

That goes with my watery eyes, and I even have it a little when niacin removes the rest of my symptoms.



We will try Niacin. Did u take 300mg per day? Plz give some instructions.

We have sleeping problems too. if we ejaculate few days continuously, we have to spend some sleepless horrible nights it it recover. It is really painful... Need to sleep but cannot. Burning eyes and pain in eyes with tears. Headache... did u have that too?

I have another problem. I'm a Restrictive Cardiomyopathy patient.. still in early stage. It's also a rare disease which is no cure yet. So there are some medicine which are not good for me. I don't know what are they. So first of all i have to check whether Niacin is okey for me or not. however my guy can take them, he has no such problems.   


Here's a link to the basic procedure:
http://poiscenter.com/forums/index.php?topic=319.msg4233#msg4233

If you eat a big meal before (with heavy meats etc) you might have to wait longer than the 3 HRS. If you take it in the morning after 8 hrs or more of fasting, 100mg should be plenty. After 3 hrs fasting you might need 200mg or so.

The flush is the best indicator. If you get a good flush and wait for it to pass the peak, you'll have best results.

Also take a look at the B-Complex regime. Has very good promise and doesn't have such strict guidelines, but we are realtively new in the testing department on that regime.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: rakeshbaasu on August 03, 2012, 11:28:07 AM
India
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: LAPOISSE on August 08, 2012, 07:45:49 AM
France
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: tom on October 14, 2012, 08:15:59 PM
UK
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Andy451 on October 18, 2012, 02:15:15 AM
We wish to provide a one stop orderly summary of POIS for both outside researcher as well as new and potential future members.

We wish to compile information from all our diverse sources, which have been developed over the last 5 years. As you know the NSF forum was organized as a one thread forum, so some information is deeply buried, and most of it not very organized, however there exists a treasure chest of highly detailed and relevant information there.

There are other sources like the POIS Compendium, surveys that have been developed over a large period with excellent demographic profiles, a collaborator data base, vsarious lists of user symptoms and medication attempted with corresponding results.

The first attempt will be to compile and summarize our experience. A second pass will produce formated relational databases which will allow us to find and compare characteristic.

This thread is to receive and process suggestions and solicit help in the processing and organization of this information.

A parallel thread will be created for a formal documentation and summary of the information.

The goal is to provide to you, the opportunity to help assure that the future of POIS will be resolved with the best of possible available information on the subject.

The actual generation of the format and documentation of the Summary thread will be undertaken by a committee of hopefully 3 volunteers plus Demo and I, to help assure that no decision is seen to be "personal". We will accept any volunteer applications by PM. The accepted volunteers will have moderator access to this category.

Thank you

Daveman, I'm currently undergoing an experimenta​l treatment for POIS. I would be happy to share information​, history and do surverys as long as I clear it w/ my Doc. I am currently working with two informed doctors on the east coast US.  I have learned more in the last year about POIS than in the previous 14 of suffering from it. I have so much to share. I will be on to chat between 6-8 PM eastern time. I would love to contribute in any way possible. Please contact me, I am hopeful that I am moving in the right direction with this illness for the first time in my life.
Title: Re: POIS SUFFERERS BY COUNTRY
Post by: gondal4 on November 23, 2012, 11:35:27 AM

pakistan
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on November 25, 2012, 01:40:30 PM
Welcome, rakeshbaasu, and gondal4!

Please visit here so that you can avail yourself of some great POIS resources:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg

Best wishes,
demo and Daveman
Your Forum Moderators
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: gondal4 on November 26, 2012, 10:52:50 AM
niacin a vitamin or what? how to take it? any name of medice itself?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on November 27, 2012, 07:09:46 AM
niacin a vitamin or what? how to take it? any name of medice itself?

There are a couple of fairly complete niacin threads with all that information. How to take it, where to buy it etc.

Use the search feature at the top of the forum (open the header area to get to it, with the little triangle if it's not already open), and search for "niacin".
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on February 10, 2013, 05:51:21 AM
Montreal, Canada
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on February 10, 2013, 10:52:52 AM
are you the same person on thenakedscientist looking for someone in montreal.
If not there is a poiser that wants to talk to another poiser in montreal.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: devastated on February 12, 2013, 04:09:09 PM
Greece
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on February 14, 2013, 02:02:42 AM
are you the same person on thenakedscientist looking for someone in montreal.
If not there is a poiser that wants to talk to another poiser in montreal.

Hey, ya im the same guy! im desperately looking to meet a fellow poiser in my area and discuss many issues and ideas about pois. It would definetely feel good to just talk it out with someone in person who can understand and have the same interest level in discussing pois with me. Thank you for trying to help though CertainlyPOIS.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: fidalgo on February 14, 2013, 09:34:19 AM
Brasil
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 14, 2013, 12:43:11 PM
fidalgo, when we Cure POIS maybe we can have a POIS Forum Convention in Brasil!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 14, 2013, 12:44:42 PM
Recommend Rio? :)
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Chris on February 21, 2013, 12:36:49 PM
Greece
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: RomPeR on February 22, 2013, 06:29:08 AM
Poland
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: franchescoly on March 02, 2013, 02:16:20 PM
Colombia
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: poiseidon on April 14, 2013, 04:20:44 AM
Italy
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: nenexx on April 20, 2013, 04:12:18 PM
Sweden
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FornicationDENIED on April 20, 2013, 07:52:23 PM
Puerto Rico
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: fidalgo on April 20, 2013, 09:46:12 PM
fidalgo, when we Cure POIS maybe we can have a POIS Forum Convention in Brasil!

Hehehhehe,

I only see this now. If you want, I can show Brasil to you when you want....
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on April 20, 2013, 11:21:17 PM
fidalgo, when we Cure POIS maybe we can have a POIS Forum Convention in Brasil!

Hehehhehe,

I only see this now. If you want, I can show Brasil to you when you want....

(http://i858.photobucket.com/albums/ab143/demografx/89E35F33-2990-41D3-8C38-FB5232F66D3D-149-0000000830C768F2.jpg)

Fidalgo, if this will be our Brasil POIS Cure Carnival, you must be our Director, please!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on April 21, 2013, 01:07:44 PM
fidalgo, when we Cure POIS maybe we can have a POIS Forum Convention in Brasil!

Hehehhehe,

I only see this now. If you want, I can show Brasil to you when you want....
i might take u up on that for world cup.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: fidalgo on April 23, 2013, 10:47:08 AM
fidalgo, when we Cure POIS maybe we can have a POIS Forum Convention in Brasil!

Hehehhehe,

I only see this now. If you want, I can show Brasil to you when you want....
i might take u up on that for world cup.

I'm from S?o Paulo. The open of the World Cup will be here. If you came to S?o Paulo, I will be very happy in show the city to you. I think it would be very difficult for me to go in another cities during world cup because everything is going be too expensive...
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on April 24, 2013, 10:29:12 PM
Hey guys,

Do you feel a light sense of psychosis after not having ejaculated in over 10 days or so.

By light psychosis I mean:

Confused
Irritated
Impulsive
Loss of compassion
Loss of spontaneity

And other feelings related to these?

I am curious to hear your answers, thank you.

Chris.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: overcome on April 27, 2013, 12:33:12 PM
Chris,

I experience those symptoms, they usually clear up by the fifth or sixth day. I wouldn't call it "psychosis" though as that suggests hallucinations/delusions. But it's definitely an altered mental state.
I have a couple of stories about this state:

I still live with my parents and my little sister. Once when I was napping from having a bad episode my mother came in my room woke me up and asked me to go pick up my sister from school. Her school is about ten minutes away and lets out at 4:00. Well, instead of driving to her school I drove all the way to her dance class... 45 minutes away! I went in the building and looked around for her and couldn't find her. Then I waited around for a few minutes thinking she was probably in the bathroom or changing. After about ten minutes I go outside and realize what time it was and finally it clicks that my mother had asked me to get her from "school" and not "dance class". Mind you, It wasn't that I didn't hear what she had said, I remembered what she had said, it was that for some reason I didn't process it right. I had to call my mom and apologize and she had to go get her.

Another time I went to the Sawgrass Mall in Coral Springs. It's a BIG mall and I knew that I wasn't with it that evening so I tried to be careful. I parked in one of the very first spots so I wouldn't have to look for my car. I walked in right in between two expensive stores (it was a Neiman Marcus and another store I don't remember anymore). As I walked in I made a mental note of the stores as I passed between them. Then when I was inside the mall corridor there was a map right in front of the entrance I just took and I took a look at it. Each section of the mall had its own assigned color on the map so I remembered the color of the section that I entered in.
After an hour or so of walking around I decided to leave. Despite being intentionally careful I still ended up not being able to find my car! I remembered the color of the mall section (it's been a couple of years now but I believe it was blue) and looked for it on a map. I walked to where the map seemed to say that section was. Then I looked for the Neiman Marcus. I couldn't find it! I walked around, checked another map and again couldn't find the store or my entrance! I spent a good hour like this walking around in circles. I walked along the inside of the mall, I walked around the outside of the mall. I couldn't find the stupid store or my car. It was getting dark and the mall was closing so finally I called my father to come get me and help me find my car. At this point I was starting to doubt my sanity, thinking there was no Neiman Marcus and I had somehow confused the name of the store. My dad drives me around for a minute and... we find the Neiman Marcus with my car right in between it and another fancy store exactly as I had thought I remembered. I swear it fealt like leaving the twilight zone. The only thing I can think is that I was so out of it that I wasn't reading the maps right and I kept going to the wrong spot. That was some of the worst confusion I've had -I felt like an old person with dementia!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on July 06, 2013, 12:39:35 PM
UK
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Jimmy on July 07, 2013, 02:37:15 PM

Jordan
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on July 12, 2013, 01:28:55 PM
Hi guys,

Has it been discussed before of whether or not POIS may be a sexually transmitted disease? What do you guys think about this? What if POIS is such a new STD that is not yet even recognized. I guess the only way we will ever confirm this is if the number of sufferers increases from year to year exponentially.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Colm on July 13, 2013, 11:44:56 AM
Hi Lycos,

From my own experience of having POIS since teens, I know I had the symptoms from masturbation before I ever became sexually active with a woman. For me, that would personally row against this theory. It would be interesting to hear of other opinions and experience.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on July 19, 2013, 02:44:40 AM
Hi Colm,

Thanks for your reply, it was just a random interesting thought but I guess what you said definetly confirms that POIS is not an STD.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on July 24, 2013, 04:00:33 AM
Hey guys,

Really sorry, I think the last thing we need to do is block a fellow POISER from speaking their mind, I think it is totally unfair that the thread 'MATRIX METHOD-- BE GENTLE WITH YOURSELF - LET GO & ACCEPT YOUR "POIS" SELF" started by traderwithpois is blocked.
I think traderwithpois is on to something and I and other POISERS thought his posts were quite interesting to read. There is nothing controversial about the, its a personal opinion and choice of life on his end and at the end of the day no one is obliged to read them if they don't like what he posts. All I am saying is that we should support each other on this jouney, its hard enough as it is.

Thank you,

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Colm on July 24, 2013, 06:35:16 AM
Hi Lycos,

A welcome comment here about Traderpois and the thread 'MATRIX METHOD-- BE GENTLE WITH YOURSELF - LET GO & ACCEPT YOUR "POIS" SELF".

I also found trader's points of view were well expressed and well thought out, and were from his own experience, which I think were authentic in the way he wrote on the post.

However, I'd like to give an opinion here, having lived with the condition a long time, and used methods like he describes for I don't know how long - 2/3 DECADES !.

I am not going to go into a lot of analytics on the detail of his thinking and others replies here.

My belief is that his thinking MAY be relevant to help with symptom reduction, using a mental/psyche/EQ, power of letting go/power of belief and mind/body/spirit approaches.

With balance, I think that people will be genuinely self-helping their symptom reduction at some level, IF they can find methods that take their mind off their own symptoms, which I know is a good thing. I.E. "What we focus on grows". But it depends on one's level of self awareness, and psychological well being, to be able to do this in a meaningful way.

I also believe that early into the POIS condition, such as with your good self Lycos, this may be a highly valid method of dealing with, and who knows, maybe even reversing the impacts of symptoms.

I am strongly of the conviction that to allow him continue to have this platform, when he had clearly made his points - which to me were NOT new - but were leaning toward the dogmatic evangelic side of things, would have been an error of judgement. I know his intentions were good and all well meant and his opinions have not been deleted, just parked. Boards need good moderation.

My real point here, is that I believe it would be grossly wrong, without any hard evidence, for any member here (trader or others) to continue trying to convince people of their approach's validity with genuine POIS sufferers and this could actually be more damaging than helpful to many. I have not seen any other group of postings by another individual on the forum that were trying to sell their approach as hard as Trader.

I also think it would have been irresponsible to damage the credibility, inputs and good actions (such as the NORD fund raising etc) that seems to be evolving from this community, by drawing so much attention to something that NordNurse has stated, seems not on the agenda for potential researchers. Perhaps if the research shows it should be evaluated, it may open up this dialogue again and should do, if no physiological background to POIS is evolving. I am hopeful of the research helping me, and would not wanting one individual's strong opinions to impact this in any way.

While trader meant well and was highly articulate from what I read of his posts, I think they should be parked for now. Otherwise the moderators may allow "EGO IS" syndrome to run wild on the board. I don't think this was a denial of free speech, just a sound board management choice at a critical time in the research.

Colm
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: poisioq on July 24, 2013, 07:03:38 AM
I don't think what is going on here is a good moderation.
The moderator has recently admitted that THIS SITE DOES NOT SUPPORT DESENS in another thread. So he is going to stop that thread as well.
At the same time he is supporting the use of niacin. Which I think could be a good thing, I also used it and has helped me a lot. But nobody knows really what are the effects of the flush on the long run.
Me for example, since I started using it, I got many eczema on different parts of my body.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 24, 2013, 12:44:55 PM
I don't think what is going on here is a good moderation.
The moderator has recently admitted that THIS SITE DOES NOT SUPPORT DESENS in another thread. So he is going to stop that thread as well.
At the same time he is supporting the use of niacin. Which I think could be a good thing, I also used it and has helped me a lot. But nobody knows really what are the effects of the flush on the long run.
Me for example, since I started using it, I got many eczema on different parts of my body.


Poisioq:

I am just a regular guy, who works full time and who has very little time of his own.

I don't have problems re-opening the thread about the Matrix Method, but it was getting to dominate the board  and require excessive effort to keep it reasonable.

I just don't have the time and energy to deal with it. Nor do I care so little about you all to just let it go where it wants to lead you down a path that we have already shown to be non-effective (See NSF, it's loaded with these failed attempts). If you want that, perhaps NSF would be excellent for you.

No one else has had the time or energy, or concern enough for you all,  to go to the effort of creating a forum with over 800 members, without compensation or need for praise.

More and more as time passes our direction will be guided by the research. This is a site that (thanks the the support of some very brave members) has lead the way for true professional research on POIS. This has NEVER BEEN DONE before.

If it were completely my choice, I wold close down all the threads and deal only with the upcoming research. Anything else is conjecture, even niacin.

It helps some, but is not the cure, Matrix Method helps some, but is not the cure, Fenugreek helps some... etc. etc. Talking about theories is just chasing the tail at this point.

Things that can perhaps reduce symptoms are useful, sharing stories, supporting those who are down, all useful.

In that sense the Matrix Method has it's potential, but it wasn't being managed responsibly.

So in that respect, if you don't like the moderation go somewhere else. I'm busy!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: poisioq on July 24, 2013, 06:31:09 PM
Daveman,

No problem at all, I'll move to NSF.
But you know how the NSF works, you post something and it gets lost in space and time. Not the better place to share information.

You have created this site that Right now is the biggest pois community in the world. It is very well done I have to say and the arguments are well categorized. Me and many others in this forum have expressed many times our gratitude for your efforts.

The moderation has been good until few days ago, then you have lost the control over it because you are quite busy, you and Demografx are the only 2 moderators here.
I actually understand you, you are doing what you can.

But you cannot say to people that they are not suffering of pois  nor you can ban them because you cannot control the forum anymore.
This site is your powerful creature, but at this point there is no way back. People is coming here looking for some hope.
This is  big responsability as well.

I think you just need to let some other users help you in your role. we need more moderators, maybe one for each section, and give them the keys.
Just my suggestion.
 
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: LAPOISSE on July 25, 2013, 04:09:26 AM
Hi All,

I don't see the point of this conversation ; it should be no restrictions in express our point of views ; For me in medecine, and especially with new disease, nobody should be 100% sure of anything ; I don't support desens because it does not fit to my experience but it could be helpfull as long as it done by a profesionnal...I dont think POIS is 100% somatic, but I  believe that is involved is the POIS Loop and working on it surely help to have a better life..I'm strongly against any form of sensor and i really dont' understand why you closed trader post.
If somebody can help himself with a concentration method to the point to not fell POIS symtoms, it means it works somehow..and he his not the first one. Maybe POIS in a physical disease that need to ingredient to be triggered ; stress and orgasm ;
We should stay open to any possibility until we know more about POIS ; So far we have no any kind of certitude
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 25, 2013, 07:54:00 AM
Daveman,

No problem at all, I'll move to NSF.
But you know how the NSF works, you post something and it gets lost in space and time. Not the better place to share information.

You have created this site that Right now is the biggest pois community in the world. It is very well done I have to say and the arguments are well categorized. Me and many others in this forum have expressed many times our gratitude for your efforts.

The moderation has been good until few days ago, then you have lost the control over it because you are quite busy, you and Demografx are the only 2 moderators here.
I actually understand you, you are doing what you can.

But you cannot say to people that they are not suffering of pois  nor you can ban them because you cannot control the forum anymore.
This site is your powerful creature, but at this point there is no way back. People is coming here looking for some hope.
This is  big responsibility as well.

I think you just need to let some other users help you in your role. we need more moderators, maybe one for each section, and give them the keys.
Just my suggestion.
 

I've been very busy on a personal level for over a year and a half, so the local problems aren't necessarily because  of that.

We have one of the largest POIS forums in the world, for several reasons, one is a better "order" than the competition, but that's only a part. Another is the moderation.

We have dedicated to keeping the forum "clean". Every time there is aggression or hijacking of the forum, numbers drop. The silent majority don't want the noise. You may not see it, it may even appear that there is more traffic when this happens, but the numbers below the scenes tell the truth. Of the 800 members, maybe 80 post regularly. If 5 of those get rowdy it seems like there is more activity, but the rest fade away and readership drops significantly.

My mistake was "being too lenient" too late.As it gets out of hand it gets more difficult to manage. If individuals want to make points they are asked to do so in a responsible manner. If they don't they will become a problem.

Another BIG reason we are here is for the grant. Why people resist professional research I'll never understand. Are egos so big that they prefer to go in circles for ever rather than get down to a real solution?

We are here, for those who want to share responsibly and for those who are waiting to see what the experts really have to say. For several years we have understood that the eternal tail chasing conjecture would get us nowhere. So we did something about it.

I know that my theory is as good as any, and none other than true professional evaluation has much value at all. That's why I just prefer not to get into deep theories and "methods". Responsible sharing of things that help "fine", but none is the cure all solution.

So as you say, "This site is your powerful creature, but at this point there is no way back. People is coming here looking for some hope.
This is  big responsibility as well."

Here-  there is more hope than anything, "Professional Research".
There - well, it's a free world. Your options are open, you are free to visit either, but our rules are our rules.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 25, 2013, 10:30:49 AM
Hi All,

I don't see the point of this conversation ; it should be no restrictions in express our point of views ; For me in medecine, and especially with new disease, nobody should be 100% sure of anything ; I don't support desens because it does not fit to my experience but it could be helpfull as long as it done by a profesionnal...I dont think POIS is 100% somatic, but I  believe that is involved is the POIS Loop and working on it surely help to have a better life..I'm strongly against any form of sensor and i really dont' understand why you closed trader post.
If somebody can help himself with a concentration method to the point to not fell POIS symtoms, it means it works somehow..and he his not the first one. Maybe POIS in a physical disease that need to ingredient to be triggered ; stress and orgasm ;
We should stay open to any possibility until we know more about POIS ; So far we have no any kind of certitude

You say, "So far we have no any kind of certitude".

And that's exactly why I restrict adamant declarations of cures and causes of POIS. Trader was insisting that POIS is a result of stress.
I have not closed the thread permanently but I will insist in responsible communication if/when it's reopened. And I won't permit members to insist on what is and what is not POIS.

We have gone the round for the "Matrix Solution" many times in the history of POIS forums, NSF and here, and it has proven to be an impractical dead-end solution.

If some find that it helps, or makes life in general more livable, that's fine. Although I insist, there are many self help groups available on internet where such can be discussed with complete liberty.

There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 25, 2013, 02:23:48 PM
Just coincidentally, today or yesterday maybe it was, another $100 donation came in.

Great news and great going to the donor. This donation will apply to next year's pot, but it will apply, and will make the load smaller next year.

donations from here on will very likely be leveraged, that is, with the attention and advance brought on by the first research program, we will start to see more interest from outside in supporting something "more real".

Thanks again donor.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on July 25, 2013, 02:32:35 PM
There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.
[/quote]

I think it would be a good time to share the rules of the forum. Reason I suggest this is because I have never seen these rules. I'm assuming that Daveman is not referring to some sort of generic forum rules but something more specific to POIS and the forum.

 I recently have felt that this forum wants to stop detailed conversations on Desensitisation. Perhaps that's the point where we are now but looking at the history of the desensitisation topic which has the most posts compared to other subjects. I guess for some, especially POISers that don't look like they fall into the allergy/autoimmune POIS category this must be a big distraction. We can't have "free speech", its an illusion but we can't be censored inconsiderately. The middle ground must be hard to find when the job of moderating has to be done. The moderators will make mistakes. It would be impossible not to in my view. They are human. They must feel the weight of responsibility on their shoulders. Worst case scenarios could be that someone from this forum dies by taking action from advice given on this forum.

Going back to the desensitisation topic for a moment; from what I have read about the risks of desensitisation it looks to be linked to the laws of a country. For example, in UK 29 people died from anaphylaxis over a time period I do not know. At this point the UK government changed the laws on how it should be carried out. The change meant that all desensitisation now has to be done in a clinic and the patient should stay in the clinic for a certain amount of time after the jab. Some special equipment has to be on hand to tackle anaphylaxis as well.

I think it would be responsible to rank the risk countries for desensitisation considering there are many POISers from different countries on this forum. I don't mean to scare anyone but it may be a sobering point of reference.
FB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on July 25, 2013, 05:15:46 PM
Hey Guys,

I realize I started this controversy and I believe maybe I should clarify my point. I must say that I actually understand Daveman's point of view, the main reason for this forum is PRIMARILY to collect information relevant to this disorder for research purposes. Although I believe the Matrix method is a theory that we should all apply in our lives (to a certain extent) in order to let go of a bit of control and live more happy and balanced lives, that Matrix discussion also has potential to trigger scepticism on POIS being a "hypochondriac" disorder and we definitely do not want to go down that road. However, the only reason I thought it was unfair that the Matrix discussion was mutted is the fact that I was happy to see a fellow POISER with so much passion and enthusiasm. I believe a lot of us feel hopeless with this disease and that discussion gave some of us optimism and hope.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 25, 2013, 06:36:34 PM
There are two goals of the forum: to move forward with professional research, and provide responsible relief where possible to the members. If threads and posts and arguments complicate such, and members cannot respect the rules of the forum or push to dominate a theory they just won't be allowed.

The options for argument and conjecture are still wide open at other forums.


I think it would be a good time to share the rules of the forum. Reason I suggest this is because I have never seen these rules. I'm assuming that Daveman is not referring to some sort of generic forum rules but something more specific to POIS and the forum.

 I recently have felt that this forum wants to stop detailed conversations on Desensitisation. Perhaps that's the point where we are now but looking at the history of the desensitisation topic which has the most posts compared to other subjects. I guess for some, especially POISers that don't look like they fall into the allergy/autoimmune POIS category this must be a big distraction. We can't have "free speech", its an illusion but we can't be censored inconsiderately. The middle ground must be hard to find when the job of moderating has to be done. The moderators will make mistakes. It would be impossible not to in my view. They are human. They must feel the weight of responsibility on their shoulders. Worst case scenarios could be that someone from this forum dies by taking action from advice given on this forum.

Going back to the desensitisation topic for a moment; from what I have read about the risks of desensitisation it looks to be linked to the laws of a country. For example, in UK 29 people died from anaphylaxis over a time period I do not know. At this point the UK government changed the laws on how it should be carried out. The change meant that all desensitisation now has to be done in a clinic and the patient should stay in the clinic for a certain amount of time after the jab. Some special equipment has to be on hand to tackle anaphylaxis as well.

I think it would be responsible to rank the risk countries for desensitisation considering there are many POISers from different countries on this forum. I don't mean to scare anyone but it may be a sobering point of reference.
FB

I'll put some rules up for you Floppy. Actually there's a section for rules, and I'd never gotten around to putting them up there. They're so.... nebulous.

I can say 1) Be responsible or I can say 2) Don't spit. Both can be opened for discussion. NSF had more problems with its rules I think than it did before they existed.

One of their rules and one of ours is that 3) the moderator has the last word.


It's important that the rules are applied evenly and fairly, but again.... always open for discussion.

But I'll make you some rules and get them up there, they're sitting around here somewhere.

As far as desens. Europe is more progressive than the US. And the main problem isn't anaphylaxis! Sure that's a tough one, either you are OK or you die within minutes.

But far worse is the potential for creating an autoimmune condition. The allergists who won't do desens with sperm for POIS say that you CAN'T have an allergy to your own sperm.

Allergy refers to an allergen, basically these are foreign invaders.

The body has a completely different reaction to it's own genetic material. I personally give autoimmune etiology as a cause for POIS about 80% possibility. But it's a completely different reaction and can't be cured with desens.

So I don't know, maybe we are all fight over some stupid little difference.... however it's a tremendous difference.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on July 26, 2013, 06:53:31 AM
OK. I fine with that. I think prescriptive rules could cause too much debate about the rule themselves. So it your call on the detail. I think a few simple guidelines to express the spirit fo the forum should pop up now and then.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on July 26, 2013, 07:59:14 AM
Hey Guys,

I realize I started this controversy and I believe maybe I should clarify my point. I must say that I actually understand Daveman's point of view, the main reason for this forum is PRIMARILY to collect information relevant to this disorder for research purposes. Although I believe the Matrix method is a theory that we should all apply in our lives (to a certain extent) in order to let go of a bit of control and live more happy and balanced lives, that Matrix discussion also has potential to trigger scepticism on POIS being a "hypochondriac" disorder and we definitely do not want to go down that road. However, the only reason I thought it was unfair that the Matrix discussion was mutted is the fact that I was happy to see a fellow POISER with so much passion and enthusiasm. I believe a lot of us feel hopeless with this disease and that discussion gave some of us optimism and hope.


That's fine. Thanks for your clarification.
I agree with everything you say!

One of our biggest problems, is that nobody knows what POIS is, and we are all desperate to find a solution. We are so desperate that we are willing to take tremendous risks, and we are so "open" to see a any kind of successful coincidences as success.

I did an experiment with Viagra the other day.... the day after "zero" POIS. All I wanted to do was jump onto the forum and scream out the wonderful news.
Glad I didn't, the next day was a fairly bad day in POIS. And further experiments, that I really shouldn't be doing have had worse results. Unfortunately I need viagra, but it isn't compatible with niacin.

We have an 3 wk rule, which will come forth in the new rules, and restrict over zealous promotion of a method, especially that promises such relief. I know that Trader put all the caveats that we asked for, but persisted in his over-zealous promotion, only making a "legal note" at the end that "says this is just my experience and may not work  for everybody" (But REALY FREAKEN WORKS) between the lines.

Our members ignore doctors that say "it can't be done". We are perhaps treated with little respect, and have learned that nobody wants to go to the edge with us, so "legal notes" are ignored and seen only as a legal means  to get around saying what ever the hell you want.

I'm not here to be right, how can I be? How can any of us be. Most of these arguments that we tend to restrict are repeats from the forums since 2007. We've seen a LOT, and a lot of the same. Why repeat something that we know leads nowhere. So if we err, which is human, we prefer to err on the safe side.

Niacin almost didn't make it to the forums. the original proposition involved injecting a harder to find version of niacin. Too dangerous! But at least we found ways to take less and get better results, use a standard over the counter variety and recommend regular liver check, (twice a year).

The Matrix Method has it's potential for helping people to get through the worst. But it is difficult to manage responsibly.

I will probably reopen the thread this weekend, but it will be moderated and subject to closure again if it gets out of hand.

I don't like being anal. I didn't know what I was getting into when I started this forum, but I knew it was important, important enough to take the chance.



Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on July 30, 2013, 06:21:21 PM
Hey Guys,

Have anyone ever looked in to auto-immune encephalitis ? This is a fancy name of an auto-immune disorder that causes inflammation in the brain. Some effects of this inflammation include the following:

http://www.encephalitis.info/images/iRecovery/jigsawHead.gif

I have a feeling that Encephalitis and POIS are somehow related... I am interested to hear your thoughts

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Stef on July 30, 2013, 08:41:07 PM
Hey Guys,

Have anyone ever looked in to auto-immune encephalitis ? This is a fancy name of an auto-immune disorder that causes inflammation in the brain. Some effects of this inflammation include the following:

http://www.encephalitis.info/images/iRecovery/jigsawHead.gif

I have a feeling that Encephalitis and POIS are somehow related... I am interested to hear your thoughts



Hi Lycos!

Autoimmune encephalitis is a horrendous disorder that has only recently been identified.  We're very familiar with this rare and absolutely terrible disorder at NORD, and have heard from many overwhelmed families who are coping with it -- or something like it -- and trying to find answers.  People have spent years on psychiatric wards, heavily medicated, because of autoimmune encephalitis.

There's a specific auto-antibody that is implicated in autoimmune encephalitis -- "anti-NMDA-receptor"  -- which causes hallucinations and seizure-like activity.  It's not related to ejaculation in any way,  and is not found in men more than in women.  If that auto-antibody is discovered -- there is a treatment and a cure! The terrible truth is that it's often not diagnosed -- the patients (children and adults) are considered psychiatric patients -- and end up languishing on psych wards.

Here's a link to a book that was written by a young reporter for the NY Post -- Susannah Cahalan. It describes her experience with autoimmune encephalitis.  She was very fortunate to have parents who had money to call in the best neurologists available. (Ultimaterly, Dr. Souhel Najaar -- from New York University Medical Center -- saved this young woman from a truly horrible fate.) http://www.newsadvance.com/the_burg/features/books/article_dacc8b8a-f2fc-11e2-bd07-001a4bcf6878.html

I seriously doubt that any of you has this type of autoimmune encephalitis.  But -- there might be a specific "POIS antibody"  -- or perhaps even more than one POIS antibody -- that could be causing all the absolute misery of POIS.

Some very fine researchers have applied for your forum's POIS grant -- autoimmunity studies are in that mix. 

POIS is still a big mystery -- but you are all on the way to finding answers through solid research.

~Stef
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Limejuice on July 30, 2013, 08:54:26 PM
It might be important to note that I had encephalitis as a child (3 yrs old) but I might not represent the majority.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on July 31, 2013, 06:55:05 AM

Some very fine researchers have applied for your forum's POIS grant -- autoimmunity studies are in that mix. 

POIS is still a big mystery -- but you are all on the way to finding answers through solid research.

~Stef


Thrilling to hear that, Stef!!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Colm on July 31, 2013, 09:16:45 AM
Yes, excellent news on the researcher front. Well done all involved !
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: joe on October 22, 2013, 07:51:22 PM
USA
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 16, 2013, 02:58:47 PM
Hey guys, does anyone know any ways to prevent nocturnal emissions?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Chris on November 18, 2013, 02:40:07 AM
Hey guys, does anyone know any ways to prevent nocturnal emissions?

As far as i know there is not a certain way that will prevent 100% nocturnal emissions..But there are some small tips that you can follow if you search in google.
I have a question for you.Do nocturnal emissions cause you symptoms ? If yes, are there in the same intensity as orgasm ?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Observer on November 18, 2013, 08:27:47 AM
Hey guys, does anyone know any ways to prevent nocturnal emissions?

As far as i know there is not a certain way that will prevent 100% nocturnal emissions..But there are some small tips that you can follow if you search in google.
I have a question for you.Do nocturnal emissions cause you symptoms ? If yes, are there in the same intensity as orgasm ?

Members usually describe a mild POIS version when having a NE. But I have to say that this is not a general rule, the degree of intensity can vary depending on the person.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on November 18, 2013, 01:09:45 PM
Hey guys, does anyone know any ways to prevent nocturnal emissions?

As far as i know there is not a certain way that will prevent 100% nocturnal emissions..But there are some small tips that you can follow if you search in google.
I have a question for you.Do nocturnal emissions cause you symptoms ? If yes, are there in the same intensity as orgasm ?

I literally tie a not in it. No Joke. Get a very thick shoe lace make 3 loops of a suitable size out of it. Put all the loops around your penis. Go to sleep. If you get an erection you will wake up. I find sleeping more than 8 hours will more likely trigger NE.
FB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 18, 2013, 09:35:19 PM
Interesting.. and as for Chris18?s question, yes NE cause few symptoms for me.. its quite strange..
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 28, 2013, 03:40:07 PM
Hey guys, is there any hope that POIS might miraculously disappear one day for one reason or another like all other allergies do? I heard that allergies might appear and disappear randomly and so I was wondering if its any way possible that that might me the same case with POIS.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 28, 2013, 04:16:04 PM
Hey guys,

I just want to note to every fellow POIS sufferer out there; if you guys really want to find a cure to this, we will get nothing done by sitting in this forum and just sharing our personal experiences. We live in a time where getting in touch with someone thousands of miles away has become extremely easy; what I?m suggesting here is that we need to get out there, raise awareness, e-mail, phone, and do whatever it takes to get in touch with doctors, naturopaths and whoever might be able to help. The reason there?s very little progress with POIS is because no one knows about it! And I know what many of you are probably thinking, and that is that well probably waste our time contacting doctors since they won?t bother with a disorder that is considered fairly new and under-researched; but at least by getting in touch with people we might find that one doctor out of 100 that might be willing to help and that will be a breakthrough moment for all of us. In addition to finding this one motivated doctor, we will also raise some awareness, get people talking about this and so maybe more people will come out and say that they are POIS-sufferers as well. Lastly, maybe I am living in an imaginary fantasy, but I DO know that pharmaceutical companies want to make money, bringing awarness to people might catch the pharmaceutical companies? eyes and believe me, if that happens that will be the biggest breakthrough moment for us ever. There can be nothing better for us than to have a multi-billion dollar pharmaceutical company spending a ton of money on Research and Development for the sole purpose of making a profit out of us; which Im sure none of you will mind because I know for a fact that I would give my left nut for a drug that cure POIS. If we get them on our side we are essentially laughing at POIS, I pray to see this one day....

Before I close, I just want to say that so far I have made my way in to getting in touch with a Neuopsychologist and McGill University who is also a professor; in addition I just e-mailed Dr. Hyman about the POIS situation; he seems to believe in autimmune disorders and so I?m hoping that POIS might interest him. Take care guys, good luck to all of you, and by the way I?m in Day 2 of the cycle so I apologize in advance if some of my writing is unclear.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Daveman on November 29, 2013, 01:52:08 PM
Hey guys,

I just want to note to every fellow POIS sufferer out there; if you guys really want to find a cure to this, we will get nothing done by sitting in this forum and just sharing our personal experiences. We live in a time where getting in touch with someone thousands of miles away has become extremely easy; what I?m suggesting here is that we need to get out there, raise awareness, e-mail, phone, and do whatever it takes to get in touch with doctors, naturopaths and whoever might be able to help. The reason there?s very little progress with POIS is because no one knows about it! And I know what many of you are probably thinking, and that is that well probably waste our time contacting doctors since they won?t bother with a disorder that is considered fairly new and under-researched; but at least by getting in touch with people we might find that one doctor out of 100 that might be willing to help and that will be a breakthrough moment for all of us. In addition to finding this one motivated doctor, we will also raise some awareness, get people talking about this and so maybe more people will come out and say that they are POIS-sufferers as well. Lastly, maybe I am living in an imaginary fantasy, but I DO know that pharmaceutical companies want to make money, bringing awarness to people might catch the pharmaceutical companies? eyes and believe me, if that happens that will be the biggest breakthrough moment for us ever. There can be nothing better for us than to have a multi-billion dollar pharmaceutical company spending a ton of money on Research and Development for the sole purpose of making a profit out of us; which Im sure none of you will mind because I know for a fact that I would give my left nut for a drug that cure POIS. If we get them on our side we are essentially laughing at POIS, I pray to see this one day....

Before I close, I just want to say that so far I have made my way in to getting in touch with a Neuopsychologist and McGill University who is also a professor; in addition I just e-mailed Dr. Hyman about the POIS situation; he seems to believe in autimmune disorders and so I?m hoping that POIS might interest him. Take care guys, good luck to all of you, and by the way I?m in Day 2 of the cycle so I apologize in advance if some of my writing is unclear.



Lycos,

That's exactly what we think. And that's why, in less than a month we will be starting a professional research program through NORD. With real very qualified and expereinced POIS researchers.

At "the other forum", we got tired of going around in circles. Verbal masturbation is all it is.

Right this forum is dull right now because we don't buy into the idle chat. But this medical research program, which you all paid for with very hard earned cash, $33,500 worth, is going to break the cycle.

The research conducted by know specialists, will bring the topic into REAL medical view. It in itself will attract more experts, and begin the path to THE REAL SOLUTION.

We hope that by mid December we will know who the final researcher will be.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: sameer7777 on November 29, 2013, 02:14:29 PM
I totally agree with lycos
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: sameer7777 on November 29, 2013, 02:16:58 PM
I think we should not be ashamed to give out personal numbers here at least start with a group on Whatsapp or Facebook
every one have smart phones so please connect
we need cure I m 45 have suffered a lot now
pls connect
Thankyou
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 30, 2013, 02:01:56 AM
?lgG? is called the new type of allergies that many doctors are still not aware about; research shows that these type of allergies are autoimmune and are harder to detect what causing the allergic reaction given that the reaction usually takes place 1-2 days after the person gets in contact with the allergen. HINT HINT, is it just me or does the definition of ?lgG? allergies have POIS written all over it? I found this to be quite interesting, please share your thoughts.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 30, 2013, 02:20:56 AM
I also want to add to my previous message, how many of you do you believe in POIS being an auto-immune disorder as Dr. Waldinger had originally suggested?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on November 30, 2013, 03:19:42 AM
In mt very limited understanding: IgG is not a allergy marker (immune system attacks the body because it suspects it as a foreign agent). IgG is a healthy immune response which can increase tolerance of a particular substance (this is basically inversely true for IgE). An example would be people who have strong IgG response to the contents of milk are in the group least likely to develop allergies to milk. It may be that IgG (lack of) is related to food intolerance but there is no clear evidence to elucidate this. It seems the medical professional is far off measuring food intolerances. In the absence of this there are lists of alternative views and businesses to take your cash. I myself have wheat intolerance for the last two years. Food intolerances are often mocked at by media as a fad diets. I have experienced this stigma in real life. Food intolerances are a serious things. My experience has been very painful and made my POIS much worse. After sex I would pass blood and POIS symptoms would be crippling. That's gone now (bleeding). Wheat free has been a positive life change experience for me. There are many good reasons for not eating wheat. Not just because your are intolerant to it. Many doctors do not support the world health organisations view that whole grains are healthy. Eating wheat increases your blood sugar quicker than eating pure sucrose. Wheat can cause diabetes. Perhaps low IgG response to semen could indicate something not happening when it should be.

FB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 30, 2013, 12:56:02 PM
Hey FloppyBanana, thank for your reply and cool name by the way,

So are you suggesting that POIS is not related to IgG allergies given that POIS is not food related? And about regarding food intolerance's, I have heard and read that people with gluten/wheat intolerance have identical symptoms to POIS with the only difference being that their reaction is from gluten/wheat while us being orgasm/sperm/semen; what do you make of this, do you think they?re at all related?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on December 01, 2013, 05:06:16 AM
Hi Lycos,

IgG could be related to POIS (in my very limited understanding) but given the fact that there is so much inconclusive methods of testing at the moment it seems hard to see how investigating this avenue could produce quality results and help and POIS work.

I would say the symptoms of POIS and wheat intolerance are quite different. The only similarity in symptoms I have experienced was just before I discovered wheat was causing me a problem I did have noticeable cognitive impairment and fogging headedness. The symptoms of wheat intolerance and POIS and quite different overall. It may worth noting that the small intestines is often considered the centre of the immune system which is also very close to the reproductive organs. So if you have both conditions it is easy to see why the impact could be quite severe.

Thanks FB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on December 01, 2013, 09:23:43 PM
Hey Guys,

For about a year now I?ve thought of the idea of meeting a fellow POIS sufferer in person, I thought it would be really interesting sharing our experiences with his disorder in person; I asked this in the forum last year, and I apologize for asking again, I just want to give it another shot since we probably have a few new members in the forum since then. I would like to know if there?s a POISer around the region of Montreal, Canada that would me interesting in chatting, if so feel free to contact me!

And Floppy Banana thanks for insight, I guess the major conclusion we come to with every theory is that ?More research is needed!?'. What frustrates me, and I really don?t mean to be negative is the fact that they?ve been trying to find cures for food intolerances such as Celiac disease for years and are still unsuccessful makes me feel hopeless about finding cures for POIS..
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on December 02, 2013, 03:26:17 PM
Hi Lycopoulos,

I would like to know which members are UK based as it would be good to share positive experiences with the medical profession based in the UK.

The UK based doctors I have spoken to that have written POIS papers are:

David Goldmeier
Selwyn Dexter

Dr Dexter has a guess that POIS which is alleviated with Progesterone is caused by some sort of chemical cascade. Pretty vague but at least he is honest about it. He advised me last week that the person documented in his paper has taken progesterone for 2.5 years now. During this time his partner got pregnant again. This seems to indicate that at least in the short term that progesterone does not make you infertile. However no one know the long terms effects on males (females more is know). FYI - The primary use of the progesterone drug is for delaying women's periods. Woman can take up to 3 tablets per day for 17 days which is 52 tablets in total. For one ejaculation I need to take 7 tablets over 5 days. I am taking this cautiously. After a year of take it on and off I recently went from 6 to 7, 5mg tablets and the results have been much improved.

Dr Dexter is currently doing some tests on me. It will take a long time because I only have sex once a month. I will urge him to write a paper about the results as I believe there needs to be something documented about the effects on the body and semen when taking progesterone

Yes we do need more research! Let's hope that POIS is less tricky than Celiac to cure. I feel quietly confident it will be.
FB

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: POISrival on January 21, 2014, 03:58:48 AM
Since everybody mentioned his location.
you can add Egypt to the list.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on January 21, 2014, 06:51:16 AM
Hi drmmeha,

I not sure if you are aware but there are doctors in Egypt who wrote a medical paper on PIOS. I would recommend reading all the POIS medical papers anyhow. You can obtain them from the forum administrators Daveman or Demogrfx.

I am curious; does your forum name indicate you are a Doctor?
All the best - FloppyB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: POISrival on January 21, 2014, 08:40:00 AM
Hi drmmeha,

I not sure if you are aware but there are doctors in Egypt who wrote a medical paper on PIOS. I would recommend reading all the POIS medical papers anyhow. You can obtain them from the forum administrators Daveman or Demogrfx.

I am curious; does your forum name indicate you are a Doctor?
All the best - FloppyB

Hi,

Thanks for your Concern. I have just read it. I think there are similar cases in Egypt who are embarrassed to speak up because of the conservative society.
Is there a direct Link to the other medical papers or should I write to the administrators?

I'm still a medical student (Fifth grade)

Thanks FB





Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on January 21, 2014, 11:21:06 AM
drmmeha, I sent you via your EMAIL 5 papers. Let me know if any problems opening.
Welcome to POISCenter!
Demo

Also, please visit our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: POISrival on January 21, 2014, 05:29:08 PM
drmmeha, I sent you via your EMAIL 5 papers. Let me know if any problems opening.
Welcome to POISCenter!
Demo

Also, please visit our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

Thanks a lot, There is no problems going. I found those papers very useful.

one paper referred that diclofenac worked out for one case. it reminded me of Voltaren (Diclofenac Sodium), I used to use it after Orgasm in the form of suppository and It helped(Mainly on the somatic aspect) , but its very dangerous to the Kidneys if used a lot,  so I had to discontinue.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: lineman on January 31, 2014, 12:26:53 PM
FloppyBanana
50 years a sufferer. Somerset,UK ,    Ive seen Urology specialist at Musgrove Park hospital over the years, and they have tweeked differant things such as a vascectamy,antibiotics ect, they agree more research is needed ,i am willing to be a Guine Pig for those Instituions who would like to do more research. It may be genetic, Ive got two Grandsons and i dont want there life taking the same path.   Im a Lefty left footed and left handed , may be confused brain signals play a part in Pois .
Doctors say i have an unusal shaped Prostate ,plus i think the endocryne system plays a key role in Pios.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on January 31, 2014, 03:06:17 PM
Welcome lineman,

I hope you can find a remedy on this forum that works. I am cautious about being "Geine Pig" as I had had Dr Goldmeier (POIS paper author) try and sit me down with a behavioural specialist. I declined, I have not got time to speak to a shrink about this. I will go to the US for the new study to get an fMRI scan if possible.
For me Progesterone works to relieve 90% of symptoms. You may have a hard time getting doctors to prescribe it not the NHS. I have been turned down three times. Dr Dexter (POIS paper author) has a surgery which is not too far from where I live in London so I can get it there. I would contact him if you want to try it. However, it doesn't seem to work for that many people.
FB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Towndown on February 05, 2014, 10:25:11 AM
Also I'd like to remind everyone to post your pois summary, which should at least ... Many ideas and much speculation on the cause of POIS has taken place on this thread and at our main forum.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: lineman on February 06, 2014, 01:29:26 PM
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
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on February 08, 2014, 04:37:51 AM
Hi Lineman,
Thanks for your post. I find Niacin a tricky one because sometimes I flush and sometimes not. Once I took 400mg of flush type Niacin on an empty stomach and still did not a flush. Other times I could take a hundred and have a flush. As we know you need the flush to get the POIS protection. With the Progesterone I always take the same amount and it provides 100% consistent relief without fail.

What makes you think that we will all get Benign Prostate Hyprotophy?
FloppyB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on February 27, 2014, 01:39:00 PM
FSession,

What website are you talking about and why do you have a link of a fashion website in your footer? It looks suspisious like you are some kind of ambush marketeer.
FloppyB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 27, 2014, 11:35:46 PM
Thanks, FB, for your Spam Alert! :)
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: POISER on April 21, 2014, 08:02:28 AM
France
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: madmax on May 02, 2014, 06:45:45 PM
Belgium
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: june31kilo on May 15, 2014, 08:24:03 AM
Where can I get help.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on May 15, 2014, 08:59:46 AM
june31kilo, welcome to POISCenter!

Please check our Welcome Page for resources:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on May 19, 2014, 06:31:10 PM
Hey Guys,

Sorry I haven?t posted in a while, been very busy with school exams, POIS and life; to start off I want to mention that I am closely working with a doctor and professor that specializes in rare sexual disorder and who also teacher at one of the top med schools in the world (McGill University). Him and his associates thought it would be a good idea to test by cortisol level throughout my cycles, so now I am currently doing saliva tests all day long for a period of 9 days (3 pre-O, 1 on day of O, and 5 post-O). Once I get results I?d be more than glad to share them with you guys.

I also want to add that I am going on a student exchange for 5 months, and I?m debating whether it would be better to get an apartment on my own or share one with other students. If anyone has experience on this topic or would like to share their thoughts please feel free to do so. Thanks!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mat780 on May 20, 2014, 06:48:53 PM
Lycopoulos, excellent news!
Please, keep us updated with the results!
It's great to know there are other doctors investigating POIS!

Good luck with your student exchange!

Hey Guys,

Sorry I haven?t posted in a while, been very busy with school exams, POIS and life; to start off I want to mention that I am closely working with a doctor and professor that specializes in rare sexual disorder and who also teacher at one of the top med schools in the world (McGill University). Him and his associates thought it would be a good idea to test by cortisol level throughout my cycles, so now I am currently doing saliva tests all day long for a period of 9 days (3 pre-O, 1 on day of O, and 5 post-O). Once I get results I?d be more than glad to share them with you guys.

I also want to add that I am going on a student exchange for 5 months, and I?m debating whether it would be better to get an apartment on my own or share one with other students. If anyone has experience on this topic or would like to share their thoughts please feel free to do so. Thanks!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on June 20, 2014, 11:19:03 AM
Hey Guys,

Is there a slight possibility that POIS can be causing damage to the brain every time we enter in a cycle? Does anyone have information about this?

Thanks
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on June 20, 2014, 03:38:07 PM
Hey Guys,

Is there a slight possibility that POIS can be causing damage to the brain every time we enter in a cycle? Does anyone have information about this?

Thanks

My only GUESS is no.

I think we recover when we return to non-POIS.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Confused on July 06, 2014, 05:52:19 PM
US. Where can I find a summary of responses?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Myers6609 on July 29, 2014, 05:33:10 PM
US.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Defsync on August 13, 2014, 09:12:57 PM
Hey Guys,

Is there a slight possibility that POIS can be causing damage to the brain every time we enter in a cycle? Does anyone have information about this?

Thanks

no, but i wonder if because of the cognitive dysfunction if "things learned" during this period of time (POISed) are not as easily retained or easily recalled at a later point. so for example if you are studying while POISed, although you arent "damaged" the information that you studied MIGHT be in your memory cortex. just a theory tho
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on October 01, 2014, 02:48:05 AM
Hey guys if anyone is in Madrid, Spain interested in meeting send me a message!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Andy451 on October 01, 2014, 02:45:33 PM
North NJ- USA 
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: poisioq on October 02, 2014, 09:41:53 AM
the same for the ones in Barcelona
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: sameer7777 on October 02, 2014, 10:37:10 AM
ANYBODY IN KARACHI !!!???
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Pvchain on October 02, 2014, 11:19:52 AM
Brazil
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on October 03, 2014, 05:31:29 AM
Hey Guys,

Just a heads up, my doctor tested my cortisol levels before and after O for a 10 day period, with 6 tests a day at very specific times, and 14 tests on day of O. Results showed that cortisol levels do have an irregular change after O; for me this is good news because I finally have reliable and reputable proof that the condition is there and "it's not all in my head". Would love to hear your thoughts!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Chris on October 03, 2014, 06:38:54 AM
Hey Guys,

Just a heads up, my doctor tested my cortisol levels before and after O for a 10 day period, with 6 tests a day at very specific times, and 14 tests on day of O. Results showed that cortisol levels do have an irregular change after O; for me this is good news because I finally have reliable and reputable proof that the condition is there and "it's not all in my head". Would love to hear your thoughts!

I always believed that cortisol has a strong interaction with POIS, and this is the proof of that. Are you thinking of starting an anticortisol therapy ? Did your doctor suggested you one ? Please keep us updated Lycos!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on October 15, 2014, 04:49:03 PM
Hello everyone..

I just want to say that i have found the answer and solution to our problem.. I know this is a big statement to say, but this is real, legitimate, no bs speculative under-researched doctor practices? I?m cured and I don?t remember the last time I felt this good in my life.. I was postponing this in order to write a massive post of why and how this treatment works but instead ill keep it short and simple, for those of you who don?t believe that it might be this simple its fine you don?t need to try it, I?m not here to convince anyone; however being a member of this community I feel like i have the obligation to share my success in the hope that other will benefit from it as well

Straight up? this is an AUTOIMMUNE DISORDER, people with autoimmune disorder are A LOT more likely to develop more autoimmune disorders as well as cancer later on in their lives. This is why WE ALL HAVE DIFFERENT SYMPTOMS, some of us have multiple autoimmune illnesses? The disorder is real and its there, theres no doubt about that however IT IS REVERSABLE..
I felt like crying when I first saw my first bouts of improvement because I couldn?t believe how simple this was?? I have my life again!!!!

The answer to the autoimmune problem is REDUCE INFLAMMATION, do ANYTHING possible to reduce inflammation.. I don?t understand the mechanics of inflammation and autoimmune so I won?t start throwing medical terms around just to show you that I?m an expert in the field but it comes down to basics. We are not alone, you might think that POIS is very rare, however the TYPE of disease (autoimmune) is extremely common especially in the last couple decades for XY reasons that I won?t get in to right now; my point being is that there is a lot of research out there and I will leave it up to each one of you to do on your own. Whats important to know and understand is that 80% of the immune system is IN THE GUT, which means if your GUT is not healthy, your immune system is not healthy. From my understanding of the little medical knowledge that I have, when there is intestinal permeability (leaky gut), theres are UNDIGESTED FOOD PARTICLES that enter the bloodstream and the immune system gets in the habit of fighting them off and eventually leads to IMMUNE ANOMALIES (Ex. Arthiritis, Diabetes, MS, POIS)? So what am I saying here?

-Heal the gut and stop intestinal permeability, (intestinal permeability: "holes" in the lining of your intestine for the not english native speakers.
-REDUCE INFLAMMATION?. Inflammation is the number ONE cause of brain fog? Read up about this, there are tons of research out there proving this.. (BTW: Inflammation in the brain effects the Amygdala, the part responsible for emotional reasoning, hence the behavioural emotional side effects of a POIS attack)
-STOP EATING FOODS THAT TRIGGER THE IMMUNE SYSTEM

By doing these two things, first you?ll reduce symptoms as you will reduce inflammation, second you will heal the gut so the permeability no longer occurs, and eventually with time the immune system will go back to normal where it won?t be triggered by anything non-threatening anymore.

GUYS, all I?m gonna say is that people with food intolerance's can go through a whole life-time without diagnosis and without knowing they have them; you have to let go of the idea that food intolerances are follow by extreme body reactions such as rashes etcs? symptoms can be as subtle such as low energy, unclear thinking, behavioural problems, etc. And this is why for a lot of people symptoms continue to come back even after a week of O given that your body is STILL FIGHTING SOMETHING (Sign of multiple autoimmune disorders, very common). This is also the reasons why POIS gets worst with the years, autoimmune problems LEAD TO MORE AUTOIMMUNE problems. Solve it and deal with it as soon as possible before its too late! Its not a neurotransmitter issue nor endocrinological, Im not a doctor, perhaps there is a change in these hormones however you have to understand THESE ARE SECONDARY EFFECTS, NOT THE CAUSATIVE?You have TWO options to dealing with POIS (And any condition), Either you treat the symptoms OR you treat the cause once and for all? Im not willing to put up with POIS all my life so I decided to put an end to this?

Now the part you?re all probably waiting for.. I have dedicated my life to this, I have read TONS of researches? tr ial and error, it took me 5 years of suffering with POIS to come to the bottom of this.. I have also seeked spiritual therapy and I feel like someone up there has finally given me the chance to live again.. Because lets be real, a person with POIS is dead, and i feel like i have come back to life again?

The answer is DIET, it cannot get simpler than this!!! Individual supplements and vitamins DO NOT WORK, ARE INEFFECTIVE, WASTE OF MONEY. It is the interconnections and combinations of vitamins, minerals, antioxidants that work together to make the body work effectively. The human body is a superb, highly sophisticated and complex mechanism that has high nutritional needs of the best kind!
A simple vitamin C supplement will not work as each vitamin is INEFFECTIVE without the other? It tools me YEARS to realize this.. Ive wasted tons of money on supplements. A balanced Diet is the most important thing us POISERS need to do right given that our body is suffering and the more you let it suffer the more it will break down.. This disease is REVERSABLE TRUST ME..

What is this Magic diet?

Avoid every possible stomach irritant + replace inflammation causing foods with ANTI-INFLAMMATORY FOODS.
The foods you eat must posses two qualities: must be easy on the stomach and reduce or not cause inflammation.






The most common Stomach Irritants with people having autoimmune disorders and food intolerances in the world are the following (Foods to AVOID):

All grain products as well Gluten (Of course) So forget about bread and pasta
No nuts & seeds (This includes coffee and chocolate)
Animal milk Products 
Eggs
Tomatoes
Corn (So forget about gluten free products because most of them are made of corn)
Potatoes
Eggplants
Peppers (Including all specs derived from pepper such as: paprika, cayenne, etc)
Beans (Not as common but recommended to be avoided)
Alcohol (Sorry guys)
Cut out all proceed foods COMPLETELY, the trick: Avoid any food that has an ingredient that you don?t know in the ingredient list.. Essentially eat WHOLE foods!
Avoid over intake of Omega 6 (As it causes inflammation)
Avoid fried foods, fried oil causes inflammation

Note: It has been found that people have healed psychiatic conditions such as Aspergers and Autism by eliminating triggers from their diet! Just putting it out there.






So what should you eat?


Pretty much all fruits and vegetables, meats and fish.
They say in order for your body to absorb the maximum potential nutrients and have the fastest and most effective healing action, try to eat vegetables raw or cook them as little as possible.
Another thing recommended is to eat 9 cups of fruits and vegetables a day.. and eat a lot of greens! Spinach, kale (Superfood), etc
Take Omega-3?s with an EPA count of at least 1000-2000mg per day! Highly effective in inflammation reduction
Another powerful anti-inflammatory is Curcumin!! Very powerful stuff, I dont recommend supplements but our body needs to relax and reduce the inflammatory response ASAP, also for curcumin try to find one with ground pepper, research has shown that ground pepper helps its absorption.

Eat a lot of anti-oxidants!! Berries are very rich in them, they reduce inflammation as well, but be careful you need a variety of anti-oxidants given that when anti-oxidants neutralize cancer-causing free-radicals, themselves (the antioxidants) become free radicals which then again get neutralized by different antioxidants. AGAIN this is why you need VARIETY

ALSO: This is how behind medicine can be sometimes, Doctors treat autoimmune disorders with cortisol steroids that suppress the immune system so that it doesn?t attack itself. Again, besides the fact that your killing your body even more that way, this only treats the symptoms not the cause.. YOUR IMMUNE SYSTEM NEEDS TO BE PUT TO REST BY not letting it get activated by commong food triggers anymore; at the same time you should do everything possible to make it as strong as possible because it is weak now, overworked and overstressed, this means make sure you get your Vitamin C and Ds from FOODs as they are extremely essential for the immune system!

A study has also found that people with autoimmune disorders are a lot more likely to be deficient in Vitamin D so this is another supplements I would HIGHLY recommend you take along with Omega 3s and Curcumin (Optional)
Ginger (Another anti-inflammatory)
Exercise (The most powerful anti inflammatory of all)

Also note that when the stomach is not functioning well there is also mal-absorption, which means you dont get all the nutrition you need to heal, so work on healing the stomach by not eating stomach irritating, inflammation causing foods.

So summary, VARIETY + LOTS FRUITS AND VEGETABLES! I cant stress this enough..




Now for all the skeptics and controversy,  Im not posting this to argue and attack any other treatment/therapies/theories, Im just here to pass on a message and help anyone I can from this miserable illness. I would be more than glad to answer specific question feel free to send me a message? I haven?t kept a record of all the researches I have read, however dont be fooled, Im not the mastermind of this healing diet, theres actually a name to it and it is called Autoimmune Protocol Diet (AIP) and I can give you guys some links to find out more about this diet of how and why it works, what you can/cant eat. Many people have reversed more serious automate illnesses than POIS with this diet such as Multiple Sclerosis.. Many Many success stories.. regardless, this shouldn?t be only for healing.. this is a lifestyle change, it will take some time, but remember that your body is YOUR TEMPLE, its with you for the rest of your life so treat it well, illness or not! Have some faith, believe and it will happen, there is hope!!


Here are some links that pretty much summarize everything Ive said, feel free to check them out for yourself, because the trick to this is to understand why this works and not just here this from some nobody that just told you it works. Im not here to convince anyone just to help...


Terry Wahls  M.D. PhD, Suffered from Multiple Sclerosis  (VIDEO)
https://www.youtube.com/watch?v=KLjgBLwH3Wc

What is Autoimmune Protocol Diet?
1) http://aiplifestyle.com/what-is-autoimmune-protocol-diet/
2) http://empoweredsustenance.com/autoimmune-paleo-getting-started/
3) http://paleospirit.com/2013/what-is-the-autoimmune-paleo-protocol/
4) http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol  <<<Great Website for Autoimmune Disorders and the Autoimmune Diet


Autoimmune Protocol Grocery List:
http://www.phoenixhelix.com/2013/06/02/paleo-aip-grocery-list/

Everything about Brain Fog and Inflammation (Research Studies)
http://selfhacked.com/2014/02/21/cause-brain-fog/



So much for my short post! I tried to keep it as short and sweet as possible..I can write a book about this believe me, please message me I would be more than glad to answer any questions:)
Last but not least, In order for this to work you must follow this diet 100%, NO CHEATING, a small trace of a common trigger can produce an immune response..  You need to teach your immune system to RELAX! Goodluck! stay strong you can do it, take care and love your body, you need to feed it rocket fuel and get it to run like a Ferrari again!!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: sameer7777 on October 15, 2014, 07:55:23 PM
Hey guys, does anyone know any ways to prevent nocturnal emissions?

As far as i know there is not a certain way that will prevent 100% nocturnal emissions..But there are some small tips that you can follow if you search in google.
I have a question for you.Do nocturnal emissions cause you symptoms ? If yes, are there in the same intensity as orgasm ?

My pois started when I get nocturnal emission at night when I sleep I remember that when I was 18 years old
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: sameer7777 on October 15, 2014, 07:59:01 PM
Hey guys,

I just want to note to every fellow POIS sufferer out there; if you guys really want to find a cure to this, we will get nothing done by sitting in this forum and just sharing our personal experiences. We live in a time where getting in touch with someone thousands of miles away has become extremely easy; what I?m suggesting here is that we need to get out there, raise awareness, e-mail, phone, and do whatever it takes to get in touch with doctors, naturopaths and whoever might be able to help. The reason there?s very little progress with POIS is because no one knows about it! And I know what many of you are probably thinking, and that is that well probably waste our time contacting doctors since they won?t bother with a disorder that is considered fairly new and under-researched; but at least by getting in touch with people we might find that one doctor out of 100 that might be willing to help and that will be a breakthrough moment for all of us. In addition to finding this one motivated doctor, we will also raise some awareness, get people talking about this and so maybe more people will come out and say that they are POIS-sufferers as well. Lastly, maybe I am living in an imaginary fantasy, but I DO know that pharmaceutical companies want to make money, bringing awarness to people might catch the pharmaceutical companies? eyes and believe me, if that happens that will be the biggest breakthrough moment for us ever. There can be nothing better for us than to have a multi-billion dollar pharmaceutical company spending a ton of money on Research and Development for the sole purpose of making a profit out of us; which Im sure none of you will mind because I know for a fact that I would give my left nut for a drug that cure POIS. If we get them on our side we are essentially laughing at POIS, I pray to see this one day....

Before I close, I just want to say that so far I have made my way in to getting in touch with a Neuopsychologist and McGill University who is also a professor; in addition I just e-mailed Dr. Hyman about the POIS situation; he seems to believe in autimmune disorders and so I?m hoping that POIS might interest him. Take care guys, good luck to all of you, and by the way I?m in Day 2 of the cycle so I apologize in advance if some of my writing is unclear.

Any help you get from the Mac guill professor ..?.?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Prancer on October 17, 2014, 12:45:50 AM
Interesting Lycopoulos, it's something I'll consider giving a try. I like the idea of reducing inflammation. Changing diet will be hard, but it's something I'll probably try in the coming days/weeks. I'll be on a trip soon, but I can start trying that out. There's so much good information on the pois forum. Hope I don't miss too much since it comes so fast.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mellivora on October 17, 2014, 01:38:27 AM
Thanks Lycopoulos, great post.

I know it would vary between individuals but, in your case, could you please give us an idea of how long it was after you started to adopt and refine your diet that you noticed significant improvement in your POIS symptoms.

And, I realise it might not have been a clear-cut point in time,  but roughly how long after starting to adopt the diet did you realise you were 'cured'.

Could you also please summarise for us the POIS symptoms that you had before you changed your diet (eg. in terms of cognitive symptoms, physical symptoms and number of days after orgasm that the symptoms lasted)...

Thanks so much for sharing your findings with us and congrats on getting yourself to this stage...
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on October 17, 2014, 09:35:36 AM
Hey Melivora and Prancer,

Thanks for your replies; so I like where youre going with this, I think its a good idea that I should clarify what my definition of POIS is. On my end I had mostly cognitive symptoms, such as: severe brain fog, severe personality/behavioural issues and extreme ADD; of course followed by high anxiety, OCD from time to time and intense depression. In addition I had extremely low energy regardless of how much sleep I would get; the only thing different with my POIS symptoms when comparing to others on this forum is pain. I never experienced any form of pain either in terms of headache or physical as a result of POIS. 

Another thing with me is that over the years, my POIS symptoms would get worst as well as the fact that it would take me longer to recover. Where it would take me two-three days to recover at the age of 19; by 24 years old it took me seven days, and even after seven days I wouldnt fully recover as I would still have a lot of anxiety, depression, panic attacks and personality issues.

Lastly, a symptom that I only realized the past year or so is that my stomach would get bloated very frequently, but I never paid attention to it because either I would think its just because I eat a lot, or because its such a minute symptom compared to the disabling cognitive symptoms of POIS. Over time I realized that there is a big difference between feeling bloated and feeling full, and also realized that I don?t eat a lot, and that I would get bloated even with small portions. By that time, I hadn't made the connection that POIS might have a link with the stomach and eating habits up until I came across someone who told me he?s been battling an autoimmune disease all his life and finally solved it with a diet.

This was about a year ago, and his story is the one that first sparked my curiosity to explore the link between the stomach and immune system; I thought it would be really cool to try, but I had spent so much time and money on so many different treatments that I was really hesitant on changing my entire lifestyle just because some guy told me it works. So learning how diet and nutrition can reverse autoimmune diseases was ESSENTIAL for my recovery as it gave it more credibility and therefore was able to change my lifestyle with a purpose and not simply because someone told me it works.

So after doing months of research, I finally got the courage take it seriously and give it a try. The most shocking thing about the diet is that I noticed an increase in well-being within DAYS of doing it. I couldn?t believe how fast improvement occurred, within less than a week I hadn?t felt bloated even once, my energy AND sleep were noticeably improved. 7 days later (after I began my diet) I got nocturnal emission; this is the crazy part, I got a POIS attack of course, but symptoms were a lot less severe than normally, and on top of it they only lasted 2 days! This is what gave me the motivation to follow the diet even more; within day 3 after my NE (10 days in the diet) I went clubbing with friends that night and had a great time where normally I would never be able to do that in the middle of a cycle (especially day 3). Following those 10 days, my mind was getting sharper and clearer as the days went by; I started speaking up in class and sparking conversation with strangers, and I was loving it! Something I hadnt experienced in YEARS?. From that point on post-POIS symptoms have been  progressively decreasing, cycles last max 2 days with very minute symtpoms and the thing I am loving the most is that post-POIS I feel absolutely normal, and not just normal, but I feel amazing. In terms of energy, cognitively, sleep, digestion have improved DRAMATICALLY.. but it is important to note that as you?re doing this lifestyle/diet change, you must avoid activating your immune system, it needs to be put to rest which means that you cannot allow any triggers either in terms of food, cold, or ejaculation given that it will slow down the healing process. The idea is that with diet and nutrition you rehabilitate the immune system, as well as heal the gut which chances are that it has permeable at this point and unless that is not cured theres going to be unwanted particles entering the bloodstream activating the immune response which leads to inflammation (the whole cycle all over again); healing the gut completely can take anywhere from months to years.

The crazy part that confirms this food intolerance AGAIN, is the day I got invited to a friend supper (this was within the first couple of weeks being on AIP diet). I was very shy to tell everyone about my diet, there was cute girls there also and for some reason I was hesitant to mention anything so I simply decided to eat only the food that Im allowed to eat even though they had been in contact with eggs, cheese, and tomatoes. Within 15 minutes I got hit with a wave of brain fog.. This is where once again it was confirmed to me that my food intolerance was real once again.. And I couldnt believe it was THIS SIMPLE.

Finally after a month of being on the diet, Ive reached the point where I walk around and dont know why Im happy.. My anxiety hasnt just diminished, but has COMPLETELY disappeared. I have actually realized Im so extraverted and didnt even know it all this time. Ive been wanting to share my experiences throughout the month on this forum, but I didnt want to corrupt the place with another dead end theory unless I knew for a fact that this works on me besides all the research that confirms it out there. Well the fact of the matter is that it does work and it has changed my life. I encourage everyone to at least read up on it before rejecting it; not for the purpose of me wanting to be right because thats the least of my concerns, I just feel like I want to help people experience what Ive experienced because its seriously beautiful.

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FloppyBanana on October 17, 2014, 06:34:35 PM
Hi Lycopoulos,

I am happy for you. It's good to hear your story. I developed wheat intolerance a couple of years back. As result of wheat exclusion I feel much better. My POIS still hits me like a bus. Perhaps I should follow this AIP diet.

A friend of the family got Rheumatoid Arthritis and she followed a special diet without deviation. She has gone from hardly being able to get out of bed to having hardly any symptoms at all. "The immune system recovery plan" was a book she recommended. It calls medicine through diets "foundational medicine".

How can this POIS be so hard crack - FloppyB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Defsync on October 18, 2014, 10:24:12 PM
I like that you are diving head first into your own research.

I would like to mention that the enteric nervous system nerve controls the gut via the vagus nerve.

Damage or even temporary compression to this nerve in some form not only can affect the gut, but also how much of and what kind of nutrients are absorbed.

This is why I am very hopeful about Dr. K's study and approach.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mellivora on October 20, 2014, 05:44:42 AM
Hi Lycopoulos,

Thanks for taking time to post such a thorough reply to my questions! I'm happy for you that you have reached this stage, well done and thanks again for sharing your experience!

I do feel there is some kind of connection to digestion, whether its involving  a vagus nerve connection or otherwise. POIS has always affected my digestion (generally looser stools). When I went gluten free (one month) I needed less wipes with toilet tissue within a just a few days (less fatty stools?? - b_jim found the same thing). Right now, the diet will be difficult for me to follow in the long-term owing to the way I currently work in various locations abroad...However, while I am home it would seem silly not to try it for as long as I can. I am also still interested in trying some intermittent fasting days (I have posted before about research about fasting and it being a way of 'resetting' the immune system. Some people have found it to help their immune disorders). Trying a fast and then taking up the diet could be a way of kick-starting a recovery but that's just a thought I have at the moment. I have done a  fast for over 1.5 days before and it possibly helped general alertness and well being feeling. I didn't test POIS symptoms afterward though. There are studies that have shown a 3 day fast can 'reset' the immune system when you start eating again - google it...

The knuckles on my hands are quite swollen. The joints can get stiff and this is aggravated by rock climbing but a physio I saw thinks there may be a condition underlying it (i.e. it is more than just caused by climbing).  I will hopefully find out soon if this is arthritic/autoimmune and it would be interesting to see if the diet helps. I already feel  its possible that the fast I did helped and must try again...

For sure I feel I need to try your diet suggestions. I previously tried gluten free and within a few days my digestion seemed better. Recently I have had more wheat (eg. 'normal bread') and have a background feeling of mucus in the sinuses and at the back of the throat which could be connected but I am not definitely sure if the connection is real yet.  I haven't had any formal  tests for food intolerances. The diet you mention makes sense in a lot of ways and I will be looking into it more and trying it... What I'd  like to do  is get an assessment for my knuckle issues and, if it is some kind of autoimmune thing, I'll then have something more widely recognised in medical circles to help me assess if the diet works for me and I can also assess POIS symptoms myself with the diet...

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Prancer on October 31, 2014, 01:19:03 AM
One of the main probz for me with changing diet (besides the fact that I'm upset I can't eat much yummy food) is the fact that food is not a one-ingredient, black & white, yes or no, 1 or 0 thing. For example, if a slice of pizza causes an intolerance in someone, that doesn't mean he/she can't eat pizza...it means there are one or more ingredients on that slice that are bad. Maybe it's the sauce. Maybe the crust. Or maybe it's the cheese (dairy). I'm very open to the idea of reducing inflammation and altering diet, but it's not always easy or convenient, and I'm definitely not sure it's the actual root cause of POIS. It's definitely something to consider, and even if it "cures" someone of POIS, it doesn't mean that it is the actual cause of the illness. Another reason I bring it up is because I was recently at a restaurant with some friends, and I saw pretty much nothing on the menu that I could eat under the new plan. So I just ordered what I wanted. I can't always ask the waiter to bring me a plate full of berries or kale.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: mellivora on October 31, 2014, 04:39:28 AM
Prancer you are right. And if you eat out it can be very hard to stick to the diet in its strictest form. I started the autoimmune protocol over a week ago. However I have been adapting it a bit. The idea seems to be to eat just foods that are the least likely to cause inflammation and restricts you to foods unlikely to cause inflammation in anyone - though everyone will, I think, have other foods they can eat without problems, this will vary from person to person. Supposedly when you start feeling better you can start adding other foods in and identify problem foods if you seem to react to any when you add them back in.

I took the plunge and went straight into the strict diet. I felt pretty rubbish - weirdly light headed, hungry, low energy. I felt I needed carbs. In hindsight, it is probably more sensible to transition into the diet than make a sudden change as otherwise you are effectively asking your body to change its gut flora instantly and change the way it metabolises food (more fats for energy than carbs?) to make best use of the new diet. After a few days feeling bad on the diet, I added in rice (I've been doing quite a bit of exercise and felt deprived of the right fuel). This improved things (and I don't believe I have a problem with rice whereas I have some suspicions about wheat). Soon after I added in nuts and seeds and felt better again (in particular I added brazil nuts - perhaps I was lacking selenium otherwise but that is pure speculation). With the addition of nuts, seeds and rice the diet has been easier. Basically though its eating only fresh ingredients, no processed foods, no sugary foods, generally no grains (but rice at the moment for me) and no legumes or 'nightshade vegetables' (tomatoes, potatoes, some peppers - black pepper supposedly ok), no dairy.

Today I have had a bowl of oats which is a definite no no on the diet. I have started keeping a food diary so will see if there are any noticeable effects. I know I should give the pure diet longer in theory but I honestly don't think it was doing me any good. I've heard even gastroenterologists say that we don't really understand the gut and all its complexities. Its naive to assume that the same diet can help everyone and everyone should do things a certain way. Tolerance to different foods varies so much through the population. You have to find what works for you (if diet is the solution at all).

Its too early to say if the diet is helping my fingers -  it seems it could be but I can't definitely say. If it is the case (and I'll find out for sure if I have arthritis in my fingers very soon), its possible that cutting out dairy has made the difference - there is evidence that this has worked for others with arthritis. Obviously arthritis isn't POIS but it is thought to be (at least in some forms) autoimmune and so what helps one autoimmune condition might, I suppose, help another (if indeed there is any autoimmune issue underlying POIS).  There is also evidence that at least for some people (and it does seem to vary a lot) that cutting out nightshade  vegetables can help a bit with arthritis. However, the easiest to find (on the internet at least) scientific studies on diet and arthritis are to do with fasting followed by a vegetarian/ vegan diet and this has been shown to help some people. Some people (I've not seen any papers on this) have reported improvement in arthritis with paleo though - very different to vegan diet!!  - though both no dairy.

I decided to read up on WHY certain foods are excluded from autoimmune protocol diet and other supposedly helpful diets. Based on that and listening to my own body I am trying to find my own way.

I mentioned I have started to keep a food diary. I have tried this with pen and paper before - I was never able to maintain it. However, I downloaded an app for my phone for this purpose and it is proving a much much better way to record what I eat and how I am feeling. The app I use is this one (there are others available for iPhone etc):
https://play.google.com/store/apps/details?id=com.geoffholden.android.fooddiary&hl=en_GB
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on October 31, 2014, 06:33:18 PM
i tried diet for two days and could not make it. I am going to ease myself into it instead by learning how to cook AIP meals, as i try a lesser form of the  that involves no wheat or milk.  From my readings it looks like coconut powder is the main substitute for wheat.  Also sweet potatoes is good source of necessary complex carbs.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Prancer on November 02, 2014, 11:30:50 PM
Great advice CertainlyPOIS & mellivora. Maybe better to ease into it. Also planning ahead several meals should make it a lot easier.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Clycos on November 23, 2014, 06:06:43 PM
Hey Guys,

Just a little update that goes along with some of my previous posts; you guys should read this woman’s story and her troubles with autoimmune disease and how she overcame it. If you look online you will find 100s of stories like this. Very inspirational, shows how much influence our gut has on the body other than just digestion and that its health is VITAL to overall wellbeing.

Here’s the link:

http://brittanyangell.com/how-i-kicked-my-autoimmune-disease-into-remission/

Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Ccconfucius on December 06, 2014, 02:42:29 PM
 This book has recipes and information about autoimmune diet. The best part about the book is its  4 week plan for new comers. Each week the plan has  recipes and grocery list to follow.
This should make it easier to test diet
http://www.amazon.com/Autoimmune-Paleo-Cookbook-Allergen-Free-Approach/dp/0578135213/ref=sr_1_1?ie=UTF8&qid=1417891482&sr=8-1&keywords=autoimmune+paleo+diet
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: dean93 on December 07, 2014, 09:45:31 PM
Hi all,

I was wondering if there were any significant additions pending to the compendium? I think that's generally the best, most organized source that there is. Were there any big breakthroughs that people were thinking of adding to the Compendium? I know that's what this whole thread is about, but I was wondering if anyone could run thru them briefly.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ThisType on April 26, 2017, 09:32:03 PM
U.S.
Awesome to finally find out about the existence of POIS and this forum! (thank you!)
Working on getting up to speed - it will take me a little while.

Any work towards doing a backwards mapping from symptoms with known immediate causes (from blood tests or other verified method) back towards ejaculation?  (e.g. brain fog -> low cortison (just example - not verified) -> ? -> ? -> ejaculation. )

Thanks!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Quantum on April 27, 2017, 06:47:12 AM
Hi ThisType and welcome to the forum!  You will feel less "alone in the world"  with this "problem"  :-)

Unfortunately, there is absolutely no blood test or any other objective way to detect or measure POIS, to this date.

Dr Waldinger is supposed to currently conduct a study about finding immune markers during the POIS acute phase, but we have no news of this study for now.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ThisType on April 27, 2017, 08:31:29 PM
Hi Quantum, thanks - I've dealt with the symptoms alone for a few decades (as it sounds like many have), so any community is a vast improvement :)
 
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ericseo on September 28, 2017, 09:17:38 PM
Hello everyone..

I just want to say that i have found the answer and solution to our problem.. I know this is a big statement to say, but this is real, legitimate, no bs speculative under-researched doctor practices? I?m cured and I don?t remember the last time I felt this good in my life.. I was postponing this in order to write a massive post of why and how this treatment works but instead ill keep it short and simple, for those of you who don?t believe that it might be this simple its fine you don?t need to try it, I?m not here to convince anyone; however being a member of this community I feel like i have the obligation to share my success in the hope that other will benefit from it as well

Straight up? this is an AUTOIMMUNE DISORDER, people with autoimmune disorder are A LOT more likely to develop more autoimmune disorders as well as cancer later on in their lives. This is why WE ALL HAVE DIFFERENT SYMPTOMS, some of us have multiple autoimmune illnesses? The disorder is real and its there, theres no doubt about that however IT IS REVERSABLE..
I felt like crying when I first saw my first bouts of improvement because I couldn?t believe how simple this was?? I have my life again!!!!

The answer to the autoimmune problem is REDUCE INFLAMMATION, do ANYTHING possible to reduce inflammation.. I don?t understand the mechanics of inflammation and autoimmune so I won?t start throwing medical terms around just to show you that I?m an expert in the field but it comes down to basics. We are not alone, you might think that POIS is very rare, however the TYPE of disease (autoimmune) is extremely common especially in the last couple decades for XY reasons that I won?t get in to right now; my point being is that there is a lot of research out there and I will leave it up to each one of you to do on your own. Whats important to know and understand is that 80% of the immune system is IN THE GUT, which means if your GUT is not healthy, your immune system is not healthy. From my understanding of the little medical knowledge that I have, when there is intestinal permeability (leaky gut), theres are UNDIGESTED FOOD PARTICLES that enter the bloodstream and the immune system gets in the habit of fighting them off and eventually leads to IMMUNE ANOMALIES (Ex. Arthiritis, Diabetes, MS, POIS)? So what am I saying here?

-Heal the gut and stop intestinal permeability, (intestinal permeability: "holes" in the lining of your intestine for the not english native speakers.
-REDUCE INFLAMMATION?. Inflammation is the number ONE cause of brain fog? Read up about this, there are tons of research out there proving this.. (BTW: Inflammation in the brain effects the Amygdala, the part responsible for emotional reasoning, hence the behavioural emotional side effects of a POIS attack)
-STOP EATING FOODS THAT TRIGGER THE IMMUNE SYSTEM

By doing these two things, first you?ll reduce symptoms as you will reduce inflammation, second you will heal the gut so the permeability no longer occurs, and eventually with time the immune system will go back to normal where it won?t be triggered by anything non-threatening anymore.

GUYS, all I?m gonna say is that people with food intolerance's can go through a whole life-time without diagnosis and without knowing they have them; you have to let go of the idea that food intolerances are follow by extreme body reactions such as rashes etcs? symptoms can be as subtle such as low energy, unclear thinking, behavioural problems, etc. And this is why for a lot of people symptoms continue to come back even after a week of O given that your body is STILL FIGHTING SOMETHING (Sign of multiple autoimmune disorders, very common). This is also the reasons why POIS gets worst with the years, autoimmune problems LEAD TO MORE AUTOIMMUNE problems. Solve it and deal with it as soon as possible before its too late! Its not a neurotransmitter issue nor endocrinological, Im not a doctor, perhaps there is a change in these hormones however you have to understand THESE ARE SECONDARY EFFECTS, NOT THE CAUSATIVE?You have TWO options to dealing with POIS (And any condition), Either you treat the symptoms OR you treat the cause once and for all? Im not willing to put up with POIS all my life so I decided to put an end to this?

Now the part you?re all probably waiting for.. I have dedicated my life to this, I have read TONS of researches? tr ial and error, it took me 5 years of suffering with POIS to come to the bottom of this.. I have also seeked spiritual therapy and I feel like someone up there has finally given me the chance to live again.. Because lets be real, a person with POIS is dead, and i feel like i have come back to life again?

The answer is DIET, it cannot get simpler than this!!! Individual supplements and vitamins DO NOT WORK, ARE INEFFECTIVE, WASTE OF MONEY. It is the interconnections and combinations of vitamins, minerals, antioxidants that work together to make the body work effectively. The human body is a superb, highly sophisticated and complex mechanism that has high nutritional needs of the best kind!
A simple vitamin C supplement will not work as each vitamin is INEFFECTIVE without the other? It tools me YEARS to realize this.. Ive wasted tons of money on supplements. A balanced Diet is the most important thing us POISERS need to do right given that our body is suffering and the more you let it suffer the more it will break down.. This disease is REVERSABLE TRUST ME..

What is this Magic diet?

Avoid every possible stomach irritant + replace inflammation causing foods with ANTI-INFLAMMATORY FOODS.
The foods you eat must posses two qualities: must be easy on the stomach and reduce or not cause inflammation.






The most common Stomach Irritants with people having autoimmune disorders and food intolerances in the world are the following (Foods to AVOID):

All grain products as well Gluten (Of course) So forget about bread and pasta
No nuts & seeds (This includes coffee and chocolate)
Animal milk Products 
Eggs
Tomatoes
Corn (So forget about gluten free products because most of them are made of corn)
Potatoes
Eggplants
Peppers (Including all specs derived from pepper such as: paprika, cayenne, etc)
Beans (Not as common but recommended to be avoided)
Alcohol (Sorry guys)
Cut out all proceed foods COMPLETELY, the trick: Avoid any food that has an ingredient that you don?t know in the ingredient list.. Essentially eat WHOLE foods!
Avoid over intake of Omega 6 (As it causes inflammation)
Avoid fried foods, fried oil causes inflammation

Note: It has been found that people have healed psychiatic conditions such as Aspergers and Autism by eliminating triggers from their diet! Just putting it out there.






So what should you eat?


Pretty much all fruits and vegetables, meats and fish.
They say in order for your body to absorb the maximum potential nutrients and have the fastest and most effective healing action, try to eat vegetables raw or cook them as little as possible.
Another thing recommended is to eat 9 cups of fruits and vegetables a day.. and eat a lot of greens! Spinach, kale (Superfood), etc
Take Omega-3?s with an EPA count of at least 1000-2000mg per day! Highly effective in inflammation reduction
Another powerful anti-inflammatory is Curcumin!! Very powerful stuff, I dont recommend supplements but our body needs to relax and reduce the inflammatory response ASAP, also for curcumin try to find one with ground pepper, research has shown that ground pepper helps its absorption.

Eat a lot of anti-oxidants!! Berries are very rich in them, they reduce inflammation as well, but be careful you need a variety of anti-oxidants given that when anti-oxidants neutralize cancer-causing free-radicals, themselves (the antioxidants) become free radicals which then again get neutralized by different antioxidants. AGAIN this is why you need VARIETY

ALSO: This is how behind medicine can be sometimes, Doctors treat autoimmune disorders with cortisol steroids that suppress the immune system so that it doesn?t attack itself. Again, besides the fact that your killing your body even more that way, this only treats the symptoms not the cause.. YOUR IMMUNE SYSTEM NEEDS TO BE PUT TO REST BY not letting it get activated by commong food triggers anymore; at the same time you should do everything possible to make it as strong as possible because it is weak now, overworked and overstressed, this means make sure you get your Vitamin C and Ds from FOODs as they are extremely essential for the immune system!

A study has also found that people with autoimmune disorders are a lot more likely to be deficient in Vitamin D so this is another supplements I would HIGHLY recommend you take along with Omega 3s and Curcumin (Optional)
Ginger (Another anti-inflammatory)
Exercise (The most powerful anti inflammatory of all)

Also note that when the stomach is not functioning well there is also mal-absorption, which means you dont get all the nutrition you need to heal, so work on healing the stomach by not eating stomach irritating, inflammation causing foods.

So summary, VARIETY + LOTS FRUITS AND VEGETABLES! I cant stress this enough..




Now for all the skeptics and controversy,  Im not posting this to argue and attack any other treatment/therapies/theories, Im just here to pass on a message and help anyone I can from this miserable illness. I would be more than glad to answer specific question feel free to send me a message? I haven?t kept a record of all the researches I have read, however dont be fooled, Im not the mastermind of this healing diet, theres actually a name to it and it is called Autoimmune Protocol Diet (AIP) and I can give you guys some links to find out more about this diet of how and why it works, what you can/cant eat. Many people have reversed more serious automate illnesses than POIS with this diet such as Multiple Sclerosis.. Many Many success stories.. regardless, this shouldn?t be only for healing.. this is a lifestyle change, it will take some time, but remember that your body is YOUR TEMPLE, its with you for the rest of your life so treat it well, illness or not! Have some faith, believe and it will happen, there is hope!!


Here are some links that pretty much summarize everything Ive said, feel free to check them out for yourself, because the trick to this is to understand why this works and not just here this from some nobody that just told you it works. Im not here to convince anyone just to help...


Terry Wahls  M.D. PhD, Suffered from Multiple Sclerosis  (VIDEO)
https://www.youtube.com/watch?v=KLjgBLwH3Wc

What is Autoimmune Protocol Diet?
1) http://aiplifestyle.com/what-is-autoimmune-protocol-diet/
2) http://empoweredsustenance.com/autoimmune-paleo-getting-started/
3) http://paleospirit.com/2013/what-is-the-autoimmune-paleo-protocol/
4) http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol  <<<Great Website for Autoimmune Disorders and the Autoimmune Diet


Autoimmune Protocol Grocery List:
http://www.phoenixhelix.com/2013/06/02/paleo-aip-grocery-list/

Everything about Brain Fog and Inflammation (Research Studies)
http://selfhacked.com/2014/02/21/cause-brain-fog/



So much for my short post! I tried to keep it as short and sweet as possible..I can write a book about this believe me, please message me I would be more than glad to answer any questions:)
Last but not least, In order for this to work you must follow this diet 100%, NO CHEATING, a small trace of a common trigger can produce an immune response..  You need to teach your immune system to RELAX! Goodluck! stay strong you can do it, take care and love your body, you need to feed it rocket fuel and get it to run like a Ferrari again!!

Has anyone had any results from following this AUtoimmune diet??
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Going less Crazy on September 28, 2017, 11:48:28 PM
Hello everyone..

I just want to say that i have found the answer and solution to our problem.. I know this is a big statement to say, but this is real, legitimate, no bs speculative under-researched doctor practices? I?m cured and I don?t remember the last time I felt this good in my life.. I was postponing this in order to write a massive post of why and how this treatment works but instead ill keep it short and simple, for those of you who don?t believe that it might be this simple its fine you don?t need to try it, I?m not here to convince anyone; however being a member of this community I feel like i have the obligation to share my success in the hope that other will benefit from it as well

Straight up? this is an AUTOIMMUNE DISORDER, people with autoimmune disorder are A LOT more likely to develop more autoimmune disorders as well as cancer later on in their lives. This is why WE ALL HAVE DIFFERENT SYMPTOMS, some of us have multiple autoimmune illnesses? The disorder is real and its there, theres no doubt about that however IT IS REVERSABLE..
I felt like crying when I first saw my first bouts of improvement because I couldn?t believe how simple this was?? I have my life again!!!!

The answer to the autoimmune problem is REDUCE INFLAMMATION, do ANYTHING possible to reduce inflammation.. I don?t understand the mechanics of inflammation and autoimmune so I won?t start throwing medical terms around just to show you that I?m an expert in the field but it comes down to basics. We are not alone, you might think that POIS is very rare, however the TYPE of disease (autoimmune) is extremely common especially in the last couple decades for XY reasons that I won?t get in to right now; my point being is that there is a lot of research out there and I will leave it up to each one of you to do on your own. Whats important to know and understand is that 80% of the immune system is IN THE GUT, which means if your GUT is not healthy, your immune system is not healthy. From my understanding of the little medical knowledge that I have, when there is intestinal permeability (leaky gut), theres are UNDIGESTED FOOD PARTICLES that enter the bloodstream and the immune system gets in the habit of fighting them off and eventually leads to IMMUNE ANOMALIES (Ex. Arthiritis, Diabetes, MS, POIS)? So what am I saying here?

-Heal the gut and stop intestinal permeability, (intestinal permeability: "holes" in the lining of your intestine for the not english native speakers.
-REDUCE INFLAMMATION?. Inflammation is the number ONE cause of brain fog? Read up about this, there are tons of research out there proving this.. (BTW: Inflammation in the brain effects the Amygdala, the part responsible for emotional reasoning, hence the behavioural emotional side effects of a POIS attack)
-STOP EATING FOODS THAT TRIGGER THE IMMUNE SYSTEM

By doing these two things, first you?ll reduce symptoms as you will reduce inflammation, second you will heal the gut so the permeability no longer occurs, and eventually with time the immune system will go back to normal where it won?t be triggered by anything non-threatening anymore.

GUYS, all I?m gonna say is that people with food intolerance's can go through a whole life-time without diagnosis and without knowing they have them; you have to let go of the idea that food intolerances are follow by extreme body reactions such as rashes etcs? symptoms can be as subtle such as low energy, unclear thinking, behavioural problems, etc. And this is why for a lot of people symptoms continue to come back even after a week of O given that your body is STILL FIGHTING SOMETHING (Sign of multiple autoimmune disorders, very common). This is also the reasons why POIS gets worst with the years, autoimmune problems LEAD TO MORE AUTOIMMUNE problems. Solve it and deal with it as soon as possible before its too late! Its not a neurotransmitter issue nor endocrinological, Im not a doctor, perhaps there is a change in these hormones however you have to understand THESE ARE SECONDARY EFFECTS, NOT THE CAUSATIVE?You have TWO options to dealing with POIS (And any condition), Either you treat the symptoms OR you treat the cause once and for all? Im not willing to put up with POIS all my life so I decided to put an end to this?

Now the part you?re all probably waiting for.. I have dedicated my life to this, I have read TONS of researches? tr ial and error, it took me 5 years of suffering with POIS to come to the bottom of this.. I have also seeked spiritual therapy and I feel like someone up there has finally given me the chance to live again.. Because lets be real, a person with POIS is dead, and i feel like i have come back to life again?

The answer is DIET, it cannot get simpler than this!!! Individual supplements and vitamins DO NOT WORK, ARE INEFFECTIVE, WASTE OF MONEY. It is the interconnections and combinations of vitamins, minerals, antioxidants that work together to make the body work effectively. The human body is a superb, highly sophisticated and complex mechanism that has high nutritional needs of the best kind!
A simple vitamin C supplement will not work as each vitamin is INEFFECTIVE without the other? It tools me YEARS to realize this.. Ive wasted tons of money on supplements. A balanced Diet is the most important thing us POISERS need to do right given that our body is suffering and the more you let it suffer the more it will break down.. This disease is REVERSABLE TRUST ME..

What is this Magic diet?

Avoid every possible stomach irritant + replace inflammation causing foods with ANTI-INFLAMMATORY FOODS.
The foods you eat must posses two qualities: must be easy on the stomach and reduce or not cause inflammation.






The most common Stomach Irritants with people having autoimmune disorders and food intolerances in the world are the following (Foods to AVOID):

All grain products as well Gluten (Of course) So forget about bread and pasta
No nuts & seeds (This includes coffee and chocolate)
Animal milk Products 
Eggs
Tomatoes
Corn (So forget about gluten free products because most of them are made of corn)
Potatoes
Eggplants
Peppers (Including all specs derived from pepper such as: paprika, cayenne, etc)
Beans (Not as common but recommended to be avoided)
Alcohol (Sorry guys)
Cut out all proceed foods COMPLETELY, the trick: Avoid any food that has an ingredient that you don?t know in the ingredient list.. Essentially eat WHOLE foods!
Avoid over intake of Omega 6 (As it causes inflammation)
Avoid fried foods, fried oil causes inflammation

Note: It has been found that people have healed psychiatic conditions such as Aspergers and Autism by eliminating triggers from their diet! Just putting it out there.






So what should you eat?


Pretty much all fruits and vegetables, meats and fish.
They say in order for your body to absorb the maximum potential nutrients and have the fastest and most effective healing action, try to eat vegetables raw or cook them as little as possible.
Another thing recommended is to eat 9 cups of fruits and vegetables a day.. and eat a lot of greens! Spinach, kale (Superfood), etc
Take Omega-3?s with an EPA count of at least 1000-2000mg per day! Highly effective in inflammation reduction
Another powerful anti-inflammatory is Curcumin!! Very powerful stuff, I dont recommend supplements but our body needs to relax and reduce the inflammatory response ASAP, also for curcumin try to find one with ground pepper, research has shown that ground pepper helps its absorption.

Eat a lot of anti-oxidants!! Berries are very rich in them, they reduce inflammation as well, but be careful you need a variety of anti-oxidants given that when anti-oxidants neutralize cancer-causing free-radicals, themselves (the antioxidants) become free radicals which then again get neutralized by different antioxidants. AGAIN this is why you need VARIETY

ALSO: This is how behind medicine can be sometimes, Doctors treat autoimmune disorders with cortisol steroids that suppress the immune system so that it doesn?t attack itself. Again, besides the fact that your killing your body even more that way, this only treats the symptoms not the cause.. YOUR IMMUNE SYSTEM NEEDS TO BE PUT TO REST BY not letting it get activated by commong food triggers anymore; at the same time you should do everything possible to make it as strong as possible because it is weak now, overworked and overstressed, this means make sure you get your Vitamin C and Ds from FOODs as they are extremely essential for the immune system!

A study has also found that people with autoimmune disorders are a lot more likely to be deficient in Vitamin D so this is another supplements I would HIGHLY recommend you take along with Omega 3s and Curcumin (Optional)
Ginger (Another anti-inflammatory)
Exercise (The most powerful anti inflammatory of all)

Also note that when the stomach is not functioning well there is also mal-absorption, which means you dont get all the nutrition you need to heal, so work on healing the stomach by not eating stomach irritating, inflammation causing foods.

So summary, VARIETY + LOTS FRUITS AND VEGETABLES! I cant stress this enough..




Now for all the skeptics and controversy,  Im not posting this to argue and attack any other treatment/therapies/theories, Im just here to pass on a message and help anyone I can from this miserable illness. I would be more than glad to answer specific question feel free to send me a message? I haven?t kept a record of all the researches I have read, however dont be fooled, Im not the mastermind of this healing diet, theres actually a name to it and it is called Autoimmune Protocol Diet (AIP) and I can give you guys some links to find out more about this diet of how and why it works, what you can/cant eat. Many people have reversed more serious automate illnesses than POIS with this diet such as Multiple Sclerosis.. Many Many success stories.. regardless, this shouldn?t be only for healing.. this is a lifestyle change, it will take some time, but remember that your body is YOUR TEMPLE, its with you for the rest of your life so treat it well, illness or not! Have some faith, believe and it will happen, there is hope!!


Here are some links that pretty much summarize everything Ive said, feel free to check them out for yourself, because the trick to this is to understand why this works and not just here this from some nobody that just told you it works. Im not here to convince anyone just to help...


Terry Wahls  M.D. PhD, Suffered from Multiple Sclerosis  (VIDEO)
https://www.youtube.com/watch?v=KLjgBLwH3Wc

What is Autoimmune Protocol Diet?
1) http://aiplifestyle.com/what-is-autoimmune-protocol-diet/
2) http://empoweredsustenance.com/autoimmune-paleo-getting-started/
3) http://paleospirit.com/2013/what-is-the-autoimmune-paleo-protocol/
4) http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol  <<<Great Website for Autoimmune Disorders and the Autoimmune Diet


Autoimmune Protocol Grocery List:
http://www.phoenixhelix.com/2013/06/02/paleo-aip-grocery-list/

Everything about Brain Fog and Inflammation (Research Studies)
http://selfhacked.com/2014/02/21/cause-brain-fog/



So much for my short post! I tried to keep it as short and sweet as possible..I can write a book about this believe me, please message me I would be more than glad to answer any questions:)
Last but not least, In order for this to work you must follow this diet 100%, NO CHEATING, a small trace of a common trigger can produce an immune response..  You need to teach your immune system to RELAX! Goodluck! stay strong you can do it, take care and love your body, you need to feed it rocket fuel and get it to run like a Ferrari again!!

Has anyone had any results from following this AUtoimmune diet??

Yeah, it's pretty much my whole diet and has worked for me.  My whole diet that 100% manages my POIS post.  I can pretty much vouch for it.  I also microdose turmeric, b-complex, and cats claw.  They help with inflammation and increase energy.

Edited: I don't take vitamin c
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ericseo on October 01, 2017, 01:09:01 AM
That's really great to know. And How long exactly have you been on this diet??
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Going less Crazy on October 01, 2017, 09:37:48 PM
That's really great to know. And How long exactly have you been on this diet??

Little more than 2 years.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ericseo on October 03, 2017, 10:10:36 PM
I have started this diet last week and I?ve already seen such amazing results. I play football in high school which involves intensive workouts and practices. Usually I would feel exhausted/depressed after every practice but prior to changing my diet I have been lethargic, energetic and felt really good after practices. This is such great news for me. I have one last question though. When did you start to O freely without symptoms? And would you say you still strictly follow this diet or have you been able to start eating foods from your past diet?
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Going less Crazy on October 04, 2017, 04:09:02 AM
I have started this diet last week and I?ve already seen such amazing results. I play football in high school which involves intensive workouts and practices. Usually I would feel exhausted/depressed after every practice but prior to changing my diet I have been lethargic, energetic and felt really good after practices. This is such great news for me. I have one last question though. When did you start to O freely without symptoms? And would you say you still strictly follow this diet or have you been able to start eating foods from your past diet?

Ahh yes, at times exercise would kill me.  Increasing brain fog, inflammation and all that good stuff when I wasnt on my diet.

I would say probably in a week of consistently eating correctly I was able to O without symptoms.  I believe it was just bodily inflammation coming down.

I haven't really added anything back (grains/dairy/eggs/certain additives like aspartame and carrageenan) yet.  But occasionally I will eat something that I know I should not be eating like ice cream or reeses (dairy) or Doritos (corn) and that might mess me up for a day or two.

So I haven't been 100% with my diet because I still have intense food cravings.  But all of my symptoms have to do with the food i eat rather than having anything to do with orgasm.  So it's just a trade-off for food and good mood/clear head.  Sometimes I'll just eat the shit food.  However I religiously avoid gluten like the plague, because I still believe it is the worst and I probably at least have some version of celiac disease. 

So I'm not 100% with my diet and don't feel 100% 100% of the time because I'm not 100% on it.  But I could be 100% if I wanted it's just these cravings get the best of me.

What are you doing for carbs?  I honestly would be nowhere without GF black beans and sweet potatoes.

I wonder if you could just go gluten and dairy free or if you have to avoid as much as I do.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: ericseo on October 04, 2017, 06:30:57 PM
I?ve been intaking carbs only through vegetables such as broccoli, asparagus, mushrooms, etc. I avoid all nightshades and eggs and stuff like that. And yeah I really understand the struggle of trying to keep up With the diet 100%. Whenever I see cookies or yogurt I can?t help but shove them in my mouth especially because I?ve just started completely avoiding junk food but I think time will fix that. I?ve also purchased a cookbook called the autoimmune paleo cookbook by Mickey trescott where I can learn a bunch of meals and comfort foods that I can incorporate in my diet. Sure there are a lot of foods that we can?t eat but theres also a ton of food that?s still available.
Title: New Survey on Drug/Substance treatments
Post by: whateverestest on February 05, 2019, 09:49:18 AM
Hi all, this is my very first post here. Let me get right to the point.

What is lacking here for me, is a simple Survey or summerized like toppics where users can add option and vote about what had helped them with POIS.

Survey would state that only people who personally used some substance are asked to vote.
Votes would be on one of two options: helped me/didn't help me.

We have now access to really many resources around here, but what I do not see nor here nor on the internet is an simple survey like this. I've seen simillar voting options on other forums not realated to POIS but for other conditions.

The number of topics on POIS is absolutelly enormous and can be discouraging for people who come here first. The solution is here as follows.

I know that the issue is complicated and there needs to be done much reasearch over it, but for sake harm reduction a temporary solution will always be seeked too.

I personally tried many different things for POIS (CBD, SSRIs, SNRIs, other ADs, Vitamins, Nootropics, others) and would be glad to share my vote on them.

I wonder if this post will ever be seen at all, so pleas let me know if you agree, and advice how can we upvote it so it can come to live.

Cheers
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 05, 2019, 10:13:30 AM
whateverestest, welcome to the forum!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 05, 2019, 07:35:45 PM
whateverestest, have you seen the polling section?
https://poiscenter.com/forums/index.php?board=15.0
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: lycopoulos on July 22, 2019, 02:07:38 AM
Hi guy,

Has anyone heard of our tried ECT? Apearently this method of treating depression has a much higher success rate on patients that have inflammation: http://newsroom.ucla.edu/releases/inflammation-predict-effectiveness-electroconvulsive-therapy-depression


Also this psychiatrist swears by the effectiveness of this method for treating severe depression: http://flip.it/qJ-6Ca
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Aladin on July 24, 2019, 02:00:10 AM
belgium
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: lycopoulos on February 02, 2020, 06:18:44 PM
Anyone think there's hope in this reasearch?

Trending News: Interleukin-24 Found as Catalyst of Pro-Inflammatory Autoimmune Disorders
https://www.pharmacytimes.com/news/trending-news-interleukin-24-found-as-catalyst-of-pro-inflammatory-autoimmune-disorders

It essentially descibes a potential new treatment new treatment that targets a specific symptom may have a positive impact for patients with schizophrenia. If POIS really is a pro-inflammatory disorder that causes all the psychiatriachal symptoms, this can potentially be beneficial for POIS attacks.

Let me know your thoughts!
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: demografx on February 02, 2020, 07:10:32 PM
Interesting, lycopoulos
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Steve on November 21, 2021, 02:49:49 PM
Hi, this may help many:

https://poiscenter.com/forums/index.php?topic=4024.0
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FireLordSL on July 13, 2024, 09:31:36 PM
WOW,, we see very few females with POIS, although we've heard of it.

What are the symptoms? Are they the same in both of you? When did it all start? Has it always been "as a couple" or have you each had it separately?

There are probably a million questions.

2 from Sri Lanka with POIS
i'm female and i have pois and other one is my guy :( wanna get rid of this shit
not only rare to find a woman with pois but her partner also has it is super rare.
not to be outward,in additon to your symptoms.
do you get the symptoms when you orgasm by yourself. Does he get the symptoms when he orgasms by himself.  just trying to rule out any relationship between your symptoms.

Sorry for late reply. Yeah I and my guy both have same symptoms. We are really fighting with this and fed up :(. Our symptoms are extreme fatigue, muscle pain, back pain, neck pain, tiredness of heart, emptiness, dull sad feelings, memory difficulties, cannot concentrate (specially when it comes to studying), loss of appetite, burning eyes and pain in eyes, itching eyes, loss of hair, extreme headache, incoherent speech (cannot pronounce words correctly and feeling like memory is not working properly), depressed mood, vision problems, flabby legs and hands, joints pain, feeling very tired and lazy, skin gets sensitive and etc. All of these symptoms begin after ejaculation and last for about week or more. In the meantime if we ejaculation again, the symptoms are increasing. As long as we don?t ejaculate our symptoms are passing off little by little with the time. After ejaculating we can be happy only few hours, then we begin to feel symptoms and feeling upset of it and sick of life. These really affect us in a bad way.
And the special thing is did anyone notice your face is changing? We both have that thing too. Our mature look is reducing within a few hours after ejaculation. Our face is not clear like normal people till 4-5 days. Yes I get the symptoms when I orgasm by myself and he gets the symptoms when he orgasms by himself.
These symptoms started for my guy when he was 15 years old. But I don?t know when these really started for me. My guy was the one who found that I also have this thing. Before, we thought only he has this shit. (We called it ?Over?). Then we started to notice my symptoms too. We did search internet and I found you tube video about POIS and then I saw this forum link in the comments section.
I have lot of questions and really wanna get rid of POIS. And another thing is Sri Lankan doctors don?t know about POIS. My guy went to few doctors and they thought he has depression and gave medicine for depression. They don?t believe our symptoms. So no help from Sri Lankan doctors too.

We are afraid of our future. But since we both have this thing, we can share everything and it?s a big relief  :)


Please tell if someone has that face changing effect. Please!

Hey, I' m from Sri Lanka too. And I m a med student with POIS. I like to speak with you two. Reply to this if you two see this.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: Muon on July 14, 2024, 11:00:12 AM
You will have to send a private message FireLord. I have never seen her online.
Title: Re: Members' Compilation and Suggestions for POIS Summary
Post by: FireLordSL on July 25, 2024, 11:46:23 AM
Yeah. Its more than a decade gone now. I didnt even had POIS in 2012 :-*