[demografx]

I hereby now pledge another $750 $1,000.

It is my personal acknowledgement to EDS' and to B_Daniel's pleas.

To those still reluctant but capable: if POIS took the "social" out of you, like it did to me for many years, come on and join in with us just this once....FOR YOURSELF!! (This is your BEST shot at....a NEW LIFE!!!! Come on!!!)

[demografx]

Hi All,

There are more than a few ways to raise funds for your grant, that will also allow for anonymity.

The first one that comes to mind is selling on Ebay -- people will buy almost anything!  There would be no need to mention POIS -- you can just sell -- then donate it to your fund.

Perhaps a thread on SMF (Daveman??) for fund raising ideas might be helpful. The anonymity makes it all more challenging -- but not impossible.

There are several other rare disorders with a major personal element to them. I know that those afflicted would rather not go public with this disorder. Yet the groups have successfully raised the funds.
 
Trimethylaminuria is a perfect example (you'll need to google it). This relatively small group of individuals has done what they set out to do in one year's time. NORD is in the middle of our current research cycle and there they are in there, full force ahead.  They will soon be one step closer to finding a treatment (or a cure)!  This group does not even have a website or a forum site.  You men have TWO forums, with ultra-dedicated moderators!

FYI, trimethylaminuria is an intensely personal disorder. I'll send one of my contacts there an email to ask how they raised their funds.  If there is something to relay back to you, I definitely will.

Think positive -- raising these funds is a 100% realistic goal. :-)

Stefanie (aka "nordnurse"), you have inspired The POIS Community far more and better than if we had had Mother Theresa as a contributing forum member!

[prister]

What about rejuneuron?
Isn't that helping people?
I feel, isn't fatigue and brainfog due to deficiency in vitamin-B complex?
Also might be due to decrease in zinc level?
Memory loss and nocturnal emissions due to increase in cortisol levels in blood?
I am sure now that i might not have brain aneurysm or hematoma..!
I don't think i have migraine too but POIS itself creates headache and brainfog and causes numbness in my head..!
Nowadays i get blurred vision too..!
Hasn't Doctor Waldinger found out medication for it?

[Vincent M]

Hasnt doctor waldinger found out medication for it?

Nothing concrete it seems, but we've found multiple things that help to reduce our POIS symptoms. Have you tried niacin, fenugreek, garlic, saw palmetto, or relora for example?

Here is a site we made to record the most beneficial treatments we've found:

https://sites.google.com/site/poiswebsite/test-page/successful-methods

It is also located in the welcome email demo sent you. You should read through the info in that email because there is other helpful info as well including which of our members have been cured and how and which members have reduced their symptoms and how.

[CertainlyPOIS]

I have created a thread in other forum under fundraising for bringing ideas together for raising money. Everyone is welcomed to come share their ideas.

[Defsync]

the cure you seek may lay with this research:

http://io9.com/5848745/scientists-figure-out-how-to-switch-off-peanut-allergy

[Vincent M]

interesting Defsync. I found another interesting link off of the one you gave. It's about a condition where a person gets amnesia after sex:

http://io9.com/5848936/the-strange-case-of-the-woman-who-lost-her-memory-after-sex

[pois1]

I did speak with Dr. Waldinger and he said he is not taking any patients.  He has a backlog of potential patients for new studies and didn't want to put me on the list (I'm in the U.S.)  He suggested keep trying to find someone in the U.S. 

I've also tried getting an appointment with Dr. Bewtra, but I've not been successful.  I was told by the office today that there has been some discussion about POIS among the physicians but it seems they're still not sure what they will do with the patients interested in getting diagnosed/treated.

Has anyone here had ANY luck with finding someone to perform a diagnosis (particularly allergy skin testing) and treatment?  I'm having a really hard time finding anyone.  I talked to the heads of Johns Hopkins rheumatology and allergy departments and they've never heard of POIS and aren't offering diagnosis or treatment.  Maybe we should all start reaching out to the heads of allergy of each of the major medical schools.  I'm sure we'll find someone who will be interested.

[Quasar]

interesting Defsync. I found another interesting link off of the one you gave. It's about a condition where a person gets amnesia after sex:

http://io9.com/5848936/the-strange-case-of-the-woman-who-lost-her-memory-after-sex

Very interesting. In fact, i'm quite surprised that nearly nobody of us have been undergone to a carotid ultrasonography, I mean, we have gone to lots of neurologists, presenting quite severe symptoms. I wonder why, even if some of us are young people, those neurologists haven't done this test with more frequency.

It's quite deceiving that i wanted they to give a check to my temporal artery, because many times it looks inflamed, and they told me to go to a cardiologist!! And the cardiologist told me to go to the neurologist...

I think they don't take us seriously.

[Quasar]

the cure you seek may lay with this research:

http://io9.com/5848745/scientists-figure-out-how-to-switch-off-peanut-allergy

We should send this to Waldinger. It looks more effective and faster that the classic desensitization.

[B_Daniel]

Demo - Haha, if you could just cut your concert budget by another $20,315 we'd be there!

[demografx]

B_Daniel!.....hmmmm!......never thought of it THAT way! Brilliant!!  []

[demografx]

BTW, see what power my little 250 boost had! It pushed the pledges from 4-figures to 5!

Every little bit counts!!

[Alexander Russian]

I think, dear friends, POIS it ANAPHYLACTIC SHOCK by allergic reaction to own semen. It is enough to look at symptoms - they are very similar. At us in Russia is a lot of patients POIS. Thanks for attention!

[victor.kons]

Alexander is an active participant of russian Syndrom X blog. Recently he wrote a post where he explains that there are huge similarities in symptoms of POIS and Anaphylactic Shock. He also mentions that his mother had an allergic reaction to the sperm of his father.

The post of Alexander in russian is located here:
http://syndrom-x.blogspot.com/2011/10/blog-post.html

Victor

[Vincent M]

POIS being anaphylactic shock is an interesting idea. I wonder if anyone with POIS has tried epinephrine after an orgasm to see if it lessens symptoms since epinephrine is given to people in anaphylactic shock.

EDIT- I did an advanced google search for "epinephrine" in this forum and found a lot of discussion about epinephrine levels in the body possibly triggering POIS or being involved in some way, but I found nothing about anyone taking epinephrine in an effort to reduce symptoms.

[Habibou]

Many thanks Demo for this important pledge !!!

[demografx]

You're welcome, Habibou!

[DrDemasi]

Hi John,  I am an Australian medical researcher turned medical journalist with ABC TV and I am doing a documentary about sex/sexual function etc.  I am interviewing Dr Waldinger in the Netherlands about POIS and would like someone to talk about their experience with the condition.  Is that something you would be interested in?  If not, do you know anyone who would be willing to be a part of our science documentary exploring the condition & treatments? Are you based in Europe?
Dr Maryanne Demasi
Producer/Reporter
ABC TV Australia

(After writing this post and registering I noticed that the forum rules specify no sexual content. I was going to stop, but I did a search and found another post about it. I hope this type of discussion won't be deemed inappropriate.)


Hi. I would like to relate my very personal story of an unusual condition that I have been plagued with. Ever since puberty I have had serious problems in the days immediately following ejaculation. My first symptom was acute back pain in the days following, at whatever age it was, perhaps around 14. After a few years it changed to an impaired cognitive condition, which I would describe as definite mental illness, in which thinking becomes very difficult, and it feels horrible in a way that can not be described. I'm sure specific neurotransmitters are depleted or something, but the cause of such a reaction is what I have never been able to understand. This has occurred following both nocturnal emissions and sexual activity. To minimize the problem I am not sexually active and try to avoid nocturnal emissions.


John 

[DrDemasi]

Hi,  I am an Australian medical researcher turned medical journalist with ABC TV and I am doing a documentary about sex/sexual function etc.  I am interviewing Dr Waldinger in the Netherlands about POIS and would like someone to talk about their experience with the condition.  Is that something you would be interested in?  If not, do you know anyone who would be willing to be a part of our science documentary exploring the condition & treatments? Are you based in Europe?
Dr Maryanne Demasi
Producer/Reporter
ABC TV Australia
demasi.maryanne@abc.net.au

You're welcome, Habibou!