Something to read

[Observer]

Once system wide, we can expect inflamation on soft tissues (joints) and inflamation of menegial tissues (nerve coverings) would well explain brain fog and general myalgia.

My "injury" is just one example. Your operation could well be another. Some may even be born with some "breach point".


This is in answer to both your and JRDs question of how and why?

Daveman, thank you very much for your answer!!. I have found this on the wikipedia:

[edit] Auto-immune responseThe blood–testes barrier can be damaged by trauma to the testes (including torsion or impact), by surgery or as a result of vasectomy. When the blood–testes barrier is breached, and sperm enters the bloodstream, the immune system mounts an autoimmune response against the sperm. The anti-sperm antibodies generated by the immune system can bind to various antigenic sites on the surface of the sperm. If they bind to the head, the sperm may be less able to fertilize an egg, and if they bind to the tail, the motility of the sperm can be reduced.

From:  http://en.wikipedia.org/wiki/Blood%E2%80%93testis_barrier

[Daveman]

Yes observer, thanks.

What I've found is that doctors are more worried about lack of fertility. But even so, I was warned that the auto-immune activity also could damage the (very delicate) surgery of reversal/vesectomy. If this is true, one would expect that it could cause damages and reactions with other tissues throughout the body.

[emi_b]

JRD, and all

I think Dr. Waldinger is the only one and the first who named a previously undocumented and disregarded condition (this means that it is a pioneer not only an evaluator).
Until then people with symptoms of any kind after an orgasm where not being considered to have a definite condition.
In fact there was previously documented I think only one condition: Postcoital headache, which Dr. Waldinger wrote in his paper (I think), that it should be grouped together with POIS, into one category of postorgasmic or post ejaculatory conditions. This is a novel approach.

I saw discussions, where people with post orgasmic illness, where disregarded as having a true condition, only some sort of psychological disturbances (maybe guilt, or anything else in this category) that make them feel ill. In this context your approach as considering these symptoms, as signs of addiction, is different, and I think it could produce some interesting results, because it try to explain POIS, as being more likely a neurologycal disturbance, i.e. a brain mechanism (reward circuitry) is mallfunctioning.

Let's keep this discussion open.
Best whishes.

[JRD]

Yes and the other researcher remarked: "It seems likely that POIS represents a spectrum of syndromes of differing etiologies".

If you concentrate on individual "casuistics" sourced from NSF discussions, yourbrainonporn, Dr. Lin's pages, answers portal like Yahoo, reuniting, drug-related forums, etc., you will see, how many people suffer from very similar, yet different (in a subtle way) problems following orgasm/sexual activities.

I wouldn't exclude any thinkable cause, starting from purely psychosomatic origin (if there exist phenomenons like loss of the ability to walk, speak, urinate etc., why not post orgasmic disturbances?), side effects of drugs, underlying illnesses capable of mimicking other conditions (like Lyme), autonomic dysfunctions, bacteria, to discussed autoimmune or hormonal ones. Also, I wouldn't condemn the placebo effect in cases of so called "successful treatments", moreover in situation, there are no visible/noticeable organic changes or abnormalities in the body, "just" some hormonal imbalances or allergy to own semen.

[Daveman]

We've spent 4 yrs looking at everything.

Now's the time to start narrowing it down.

[Daveman]

As far as I know, the aim of Waldinger's work is to evaluate and treat patients experiencing flu-like symptoms + a few related conditions. That is his interpretation of POIS. But the most people complain about cognitive problems, prioritize other than flu-like symptoms and describe varying time before onset of symptoms and different length of their duration.

Just a note on this, if you read his two last most recent papers, as previously suggested, you'll find that he mentions and explains the cognitive symptoms as well.

[Daveman]

Everytime I read Daveman's posts it's like "vasectomies, vasectomies, vasectomies". I actually translate that into "me, me, me. me".

Going as far as having vicious and arrogant remarks as like "Do you even have POIS" is a no no in my book. I'm giving up on this forum because things have not changed since the first post on the nakedscientist. People riddled with placebo effects and a highly speculative theories about auto-immune reactions.

I was asked about the vasectomy. Besides, my me, me, me theory takes the auto-immune theory out of the basket, just like other's personal theories throw it in.

[JRD]

Yeah, but look at this:

- If there isn't any allergic reaction in the patient suffering from POIS, it will mean, that he is most likely not the right candidate for desensitization type of treatment, although he remains symptomatic.
- If there is an allergic reaction, somebody should perform a double-blind study within a large group of allergic patients to eliminate or confirm the placebo effect of desensitization itself.

I think too many people rely on autoimmune theory and live in hope of salvation after a few injections of their desensitized sperm, but it doesn't necessarily mean, they are either allergic or curable in case of their autoimmune confirmation.

[Daveman]

Yeah, but look at this:

- If there isn't any allergic reaction in the patient suffering from POIS, it will mean, that he is most likely not the right candidate for desensitization type of treatment, although he remains symptomatic.
- If there is an allergic reaction, somebody should perform a double-blind study within a large group of allergic patients to eliminate or confirm the placebo effect of desensitization itself.

I think too many people rely on autoimmune theory and live in hope of salvation after a few injections of their desensitized sperm, but it doesn't necessarily mean, they are either allergic or curable in case of their autoimmune confirmation.

On the second point, agreed! This was a definite failure in Dr. Waldinger's studies.
On the first point, the skin-prick test only tests for type I reaction, and miss a large part of the group. So one can fail the test and still be affected by the type IV auto-immune reaction. The desensitization treatment still would be effective. In fact there are several more very respectable doctors researching this area that do desensitization.
Nobody who really understands, expects that a few injections will save them.
Although Dr. Waldinger has not definitively proven the theory, he is among several of some of the top in the area who are following this line.

I would like to find others at their level who may have solid alternate directions.

I, like many others here I am tired of following conjecture. And although I argue this fact strongly, few are willing to settle into something more serious and definitve. That's why I started this forum, to get serious about focus.

If the only serious research out there is auto-immune related, that's what we have to follow.

The rest, just cut the theory down on conjecture and gut feeling.

If you all have other serious studies directed specifically at POIS with evidence at least as solid as Dr. Waldingers, I'd love to see it.

THATS WHAT I'M TRYING TO SAY!

[JRD]

Yeah, but that is the problem - too many questions, similarities and despair, but only the one credible direction (in terms of scientificity) formed by Waldinger's autoimmune approach.

I think, it is not sufficient enough for many of us to live with a suspection of being ill because of autoimmune processes. We can only try to find some fractions, maybe helpful studies, but that is hardly usable - we are not researchers or professionals able to critically evaluate and analyze some - let's say - seemingly unrelated hormonal implications, the role of neurotransmitters in the context of physiological changes, possible intersystemic connections etc.

So for me, the positive results of homemade remedies or even "the concept of rewiring" from yourbrainonporn are what counts and since there is too little scientific information, I wouldn't suppress any alternative/speculative ones.

[Daveman]

We are preparing to invite experts to investigate POIS. I'm not even sure if Dr. Waldinger will be interested. But he won't be the only one. If we can gather compelling evidence and/or investigate what might be happening in the areas of (OUR) interest, perhaps we can direct the invitation to a more diverse or open natured field.

My goal is to try to point to a common solution. Who knows, we have seen that testosterone for instance produces results. Why, some think because it reduces the exposure to sperm/semen, others because it reduces the regeneration period others think it points towards other elements in the chain like FH/FSH.

So, there could be / probably is room for a common element that effects the whole gammut of sources of POIS.

So homemade remedies can lend significance, although we may not be correct in OUR interpretation of what this is.

But NOW is the time to make your proposal, but not a proposal that just relieves the symptoms, but one, that points to the real cause.

For instance we shouldn't NEED to "rewire", but since it seems to help, what makes us so susceptable to need it. Where should the doctors look for this? Why are we so prone to require rewiring when living an otherwise normal everyday life.

Is there some hormonal factor? I don't know. Frankly it's not MY interest. But I would love it if you could drum something up. Give us something compelling to offer the researchers.