Free Flow Discussion about POIS

[demografx]

You have received more than just a few applications for your POIS grant!!! These applications are SERIOUS!!

You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.

To me, this is the happiest news ever since the forums started in 2007!

[eur79m]

But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald,  all other docs, allergy specialist, etc, says it doesn't make sense...

Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.

I have not been active on this forum for a long time and I was not able to contribute financially to the fund but I am fighting hard to gain some insights into POIS etiology and potential treatment/cure. My situation is special insofar as I believe that my POIS is caused by a physical trauma (breaking the blood/testis barrier) of my right testicle, resulting in continuous pain and 24/7 POIS. This hypothesis lends itself perfectly for testing it by removing the suspected cause... which is what I am trying to have done (call it the 'half-animus' solution ). The trouble is finding a physician willing to do the surgery.

To come back to Lapoisse's assurance that POIS is NOT autimmune related, I on the other hand am to 99% sure that it is. Like all of you I cannot provide any supporting evidence other than my own situation / experience but I am trying to change that. Currently I am undergoing a placebo controlled immunemodulatory therapy, sounds fancy, is very simple. I take one pill every day for 7 weeks, 6 weeks I am given a placebo, 1 week it will be Prednisone. So far I am in the 4th week and no results but I am very optimistic. Is there still nobody else on this forum who has ever tried Prednisone or even Dexamethasone?http://en.wikipedia.org/wiki/Glucocorticoid

Only yesterday I looked into the wikipedia article on 'Chronic Fatigue Syndrome' (CFS) and was extremely surprised on how well it fit my situation! Of course it does not cover the 'Post Orgasmic' part or my testicle pain but besides that it perfectly describes my experience and situation. I wonder why not more references are made here to CFS or attempts to reconcile any research that has been done so far on CFS with POIS? I would even go as far and throw POIS, CFS and Fibromyalgia all together because I suspect the same underlying immune mediated mechanism (not cause). Just google for 'fibro fog', which is very much the same as most of us are experiencing. I wish I had read the CFS article earlier, it is very well written and would have helped a lot if I had referred to it the first day I stepped into a doctors office... Check it out on wikipedia http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome or scan over my highlighted wikipedia PDF version, with the highlights referring to the points most pertinent to my situation / medical system experiences https://mega.co.nz/#!SRkngK7L!LTpiJSIboNc7EuHazgHiJEufZTFhlHf0OR4ED4eu3lQ

BTW, I am not allergic to my own semen and both serum Anti-Sperm-Antibody (ASA) as well as sperm Mixed Antiglobulin Reaction (MAR) were negative. In the developed country I am living in it was not possible to obtain an Immunobead Test (IBT).

[Stef]

Warmest greeting to all!

A guest blogger (i.e. a patient with a rare disorder) wrote a "guest" blog for NORD.  I had the pleasure of meeting this amazingly brave young woman at the Boston Marathon this past April  (the "infamous" Boston Marathon -- where an incredibly horrible act of evil took place).

I think you will all appreciate her blog --
http://blog.rarediseases.org/an-ordinary-day/

If you feel up to it, show her your support by leaving a comment on the blog page. All emails and names are confidential.

Stef

[demografx]

Warmest greeting to all!

Warmest greeting back, Stef! 

[demografx]

I've actually put my work on my summary of the member case symptoms and treatments on hold. I have to focus on other things for a while.  I'll give you the link to what I've done so far in case anyone is curious or wants to continue where I left off:

https://sites.google.com/site/poiscompilationsbyvm/

Vincent M, excellent start!

[demografx]

this great news. can i post it on the other forum.

Sure!

CertainlyPOIS and others: feel free to post any POIS news anywhere! The more sufferers we reach the better it is for everyone.

Demo

[demografx]

what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...

Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0

This can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.

[Daveman]

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.

[demografx]

Thank you, donor!!

[demografx]

The research that's been started by this group gives a glimmer of hope to all here with POIS.

Excellent news on the researcher front. Well done all involved !

Colm, thanks for your research support!

[demografx]

Fire this doc!





"You say you have POIS? You know it's all in your head, right?...so I'm referring you to Dr Probeyourpsycheforever. Oh! And remind him that he owes me a POIS finder's fee!"

[demografx]

[demografx]

In addition to serving our own informational interests, the resources listed at our Welcome Page
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "

[demografx]

Daveman and I have been advised the following about our POIS grant.

The initial abstracts have been reviewed and scored by NORD's MAC.

There are some very strong finalists for the POIS grant. They will be submitting lengthy, in-depth proposals.

No news will be available until the final decision in late November/early December.

[demografx]

Quote from: Daveman on August 04, 2013, 08:22:46 AM




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[demografx]

Thanks, Prancer!

[Daveman]

I wanted to ask Colm how his trials with niacin have gone?

Have you tried it again with the "adjusted approach"?

[Colm]

I wanted to ask Colm how his trials with niacin have gone?

Have you tried it again with the "adjusted approach"?

Daveman,

As work has been a priority recently, along with a few days family vacation,  I have just avoided all matters "O" related, as I can't take risk of the 3 day plus negative health impacts post Orgasm.

I will get around to trying this, in the smaller dosage and with the approach you shared, to avoid the scary physiological response I got first time I took too much Niacin flush.

Will report back when I have tried.

[demografx]

Seems like the only _consistent_  (works for almost everybody) POIS remedy reported since 2007 is...short-term celibacy.

I can't wait for NORD's selected researcher to get underway !!

[LAPOISSE]

You are all cured ...or maybe just all in vacation ?

Not a word in this forum for 3 days...

I've been in vacation for a week...worse vacation ever..POIS hit every single day...It's globally getting worse...No way to have relief after at least a week after O...and kinda constant POIS after....deseparating...

What about creating a section of succes story(with the rule of the 2 weeks...and even for people that have a permanent improvment of the global healh) in here...I have the feeling that when people get better, they just leave...