Finding a doctor, Recognition as POIS sufferer, Orpha-net treatment facilities

[Jacob]

Hi everyone,

with my first post I want give my thanks to this forum and the all the Admins. You made it possible for me to finally know what made me sick.
I'm currently searching for a doctor which can first recognize me as POIS sufferer and second treat me e.g. with desensitization.
In this course I'm facing a couple of questions:

Which kind of doctor should I consult? I'm currently treated by a andrologist/urologist, which doesn't have any idea about POIS.
Are there any specialized doctors known in Germany? With the Orpha-net entry my hopes were high, since a couple of German clinics were mention. I tried to contact most of them with no success. Either they said the can't treat me or that they're not responsible.

Any answer is appreciated.

Best regards,
Jacob

[Vandemolen]

I would try an allergist or an urologist.

Welcome on the forum.

[Quantum]

Hi Jacob, and welcome to the forum,

there are just a few doctors in the world who know about POIS, and with whom you won't have to explain what POIS is, because they know about it, and have even published one or more article about it.  So, it is no surprise that your urologist is clueless about POIS.

I have started to put up a list of those "POIS doctors", see at http://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 .  We hope to see this list getting longer in the coming years.

But as explained in this other thread, there is no recognized treatment they have to offer you, for now.

And, forget about desensitization.  Even Dr Marcel Waldinger, the one who created this treatment, had stopped using it.   In his last article about POIS, Dr Waldinger stopped to talk of POIS as an allergy, and now describe it as an auto-immune problem.  Auto-immune illnesses are not treated
with desens, and that's part of why, I think, that he put it aside.

Moreover, a Chinese study demonstrated that even men that do not have POIS can have a reaction at prick test with their own semen, showing that these prick tests are not a valid tool for diagnosis of POIS.

For now, you can take a look at some methods that have been shown beneficial for members, and discussed this with your current physician, to see which one would be appropriate for you to try - see at http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 

[Jacob]

Hi Vandemolen,
Hi Quantum,

@Quantum
Thanks for bringing me up-to-date in terms of the research.

About the doctors: We should then try to update the orpha.net entry, because it's misleading. The POIS entry there pointed me to several clinics around Germany and Italy, which are supposed to have experts. Here are the ones which are linked to POIS (http://www.orpha.net/consor/cgi-bin/Clinics_Search_Simple.php?lng=EN&LnkId=20421&Typ=Pat&CnsGen=n&fdp=y&from=rightMenu). The question is how did they get there in the first place?

About treatment:

I tried with niacin which helps with the muscle tension but no success with brain fog, psychological conditions and other symptoms.
Then I will probably just try some of the methods.

Thanks,
Jacob

[Observer]

About treatment:

I tried with niacin which helps with the muscle tension but no success with brain fog, psychological conditions and other symptoms.
Then I will probably just try some of the methods.

Thanks,
Jacob

Hello Jacob, which type of niacin are you taking? It is strange that is not giving you relief with the brain fog, since it usually gives good results improving the cognitive function.

This is what you need to consider when taking niacin:

1- It should be the Flush-form. Solgar or Nature's way have worked for me (100 mg each tablet, flush version)
2- You should experience the flush. 200 mg on a nearly empty stomach works for me. Crush the tablets/pills to avoid digestive issues.
3- You need to wait at least 50 min after taking them. Some forum users have reported that they need to wait longer before having the Orgasm in order to avoid POIS.

Hope that helps you,

[Jacob]

Hi Observer,

I'm using regular flush type niacin from Greenfood. Your tips guided me in the right direction. The important part for me is the empty stomach. Else the pois is long lasting and I have intense symptoms. If everything works nice and smooth my brain fog is between 1 and 4 on a scale of 10.

Currently I'm facing other severe issues, which might be caused by niacin. I'm having a constant headache of not my front brain and my nose feels numb. These might also be psychological problems, I'm not sure yet. Did you experience similar problems?

My regimen is 300 mg niacin and trying out different other supplements like fenugreek, quercetin and curcuma. Quercetin and curcuma seemed to severely worsen the symptoms. I'm not yet certain of the effects of fenugreek.
Are you using some other medicine in combination with Niacin?

Thanks, Jacob

[Jacob]

The worst part is that I get regular NE after 3 to 4 days. Some of the time I can prevent it up to two weeks. Once with a high dose of niacin I even had two NE the same night.

Any advice with that?

Thanks, Jacob