POISCENTER
POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: Nightingale on January 10, 2012, 06:44:00 PM
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I have corresponded with immunologist Dr. Bernstein of the University of Cincinnati (USA) recently, of female semen allergy fame, and he let me know he is going to be mentioning POIS in an article soon. He also expresses some skepticism and concern with the desensitization approach:
Dear (me),
I am familiar with this syndrome and actually have included it in a review I just wrote on Immunologic disorders of the Female and Male Reproductive Tracts to be published in the Annals of Allergy Asthma and Immunology in the near future. I have evaluated I individual with this syndrome in a similar manner we assess our patients with seminal plasma hypersensitivity and did not find antibodies. Currently, I am unclear as to the mechanism of action and concerned about Waldinger’s studies as they do not provide enough detail to warrant treatment of men with their own spermatozoa/semen. I would be concerned that we would be introducing a risk for autoantibodies. Interestingly, in my study of seminal plasma hypersensitivity, a good number of men do have IgG and/or IgE antibodies to their own seminal plasma proteins but we are unclear as to the relevance of this finding. We are interested in this syndrome as it seems a growing number of men are presenting with this condition. However, I am not clear on the approach to unraveling the underlying cause presently. ?Diet, Vitamin deficiencies? What is your Vitamin D and testosterone levels?
Best regards,
Jonathan A. Bernstein, M.D.
Professor of Medicine
Director of Clinical Research
Department of Internal Medicine
Division of Immunology/Allergy Section
Editor-in-Chief Journal of Asthma
Email: Jonathan.Bernstein@uc.edu
Phone: 513-558-5533
Fax: 513-558-3799
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Thanks Nightingale.
Very interesting! It would be great if you could let him know about the very good performance of niacin on many of us, and certainly we are open to whatever other ideas he might entertain.
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Wonderful news!
Please, if you can find out, which publication and when, so that we can be on the lookout!
Thank you,
demo
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It would be better if dr. Bernstein didn't do such statements without proper research. He doesn't have any clue but the only thing he said that he thinks that desensitization doesn't work. But desensitization is the only treatment that has proven to work!
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Dr. Bernstein is no slouch, and DOES proper research.
Van we DON'T know if desensitization really is 100% effecting or even 50% effective.
For the moment we have maybe 50% of the trials resulting in 40% to 80% relief.
Not really impressive.
As you know I am in favor of an auto-immune / allergy cause, but I'm still very skeptical of desensitization.
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Daveman, well said!
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As you create 2 main parts on this forum (hormonal and auto-immune), I think there is a lot of thing to search and it's a good thing to see another doctors to join our fight.
But in my mind desensitization is still the best way for the auto-immune candidate.
And hormonal therapy (testosterone, progesterone) for the others cases.
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Maybe dr. Bernstein did medical research. But not about POIS.
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Yes, I am 150% confident in NORDs process. Their MAC (Medical Advisory Committee) generates a "fairly open" Request for Proposal which is enough to attract ALL who may be investigating POIS. But they do LOTS of homework first to be in a good position to select the proposal that has the best chances of resolving the POIS dilemma.
For that reason I want to put a couple of threads on this forum that summarize everything that has been discussed on all of our forums and resources in an organized and readable fashion. It'll be referenced directly from the main page and called. POIS Research Dempgrafics Summary or some such thing.
I hope that we can solicit member's input as to the best references. I also want to include your information, along with the extensive survey that was done at one point. If we get time I'll be looking into how we can get it into a relational database (member demografics, treatments etc).
This will all be invaluable information for researchers, and we intend to try to attract them to look it all over in case "something occurs to them".
The only thing that is missing is time.
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Thanks Nightingale.
Very interesting! It would be great if you could let him know about the very good performance of niacin on many of us, and certainly we are open to whatever other ideas he might entertain.
Here's what came out of it:
Dr. Bernstein,
In regards to POIS, some of those in the online community have found benefit in taking Niacin supplements pre and post orgasm. Some report an up to 80% relief of symptoms, most 40-60%. That is for those it works for. I have tried taking Niacin at many different dosages/times and have had seemingly 0% improvement. Still, many are saying taking Niacin is changing their lives. Thought you might like to know!
Best,
(Me)
I understand. I think the problem is likely more complex that just niacin. For those that it works for then this is good as it is a simple fix. It indicates that there are likely different phenotypes (characteristics) of men who have this condition.
Jonathan A. Bernstein, M.D.