New Review Article on POIS by Dr Waldinger - August 2016

[Quantum]

cross posted from another thread:

Hi All,

It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:

http://tau.amegroups.com/article/view/11107/11778

Thanks a lot for the link, jimmy!  It has not been posted here yet.  And it is interesting!

It is a very good review article by Dr Waldinger, in which he sums up all of his ideas and previous work about POIS.  the 5 criterias defining the clinical presentation of POIS, the 7 clusters of symptoms he has defined, the hyposensitization treatment of POIS with autologous semen, discussion on the antigen, and so on.

But what surprises me is that he also add some new ideas, without citing any previous work, and seems to give some hints about his current work !

As an example, the article says "In 2015 Waldinger reported the occurrence of POIS before and after sterilisation in three men. This phenomenon means that the AG is most likely not bound to the spermatozoa but associated with the seminal fluid."  and "Indirect clinical evidence suggests that the Ag triggering the POIS systemic reaction is not bound to spermatozoa but to seminal fluid produced by prostatic tissue "" This is not linked to any references, so this may come from a speech he has given or else, it is not specified.  Take note that we came to a similar conclusions on the forum, that is, that the antigen is not linked to the semen/spermatozoa but likely to fluids from prostate or seminal glands or Cowper's glands ( see this thread: http://poiscenter.com/forums/index.php?topic=1555.0 ).  Sure, our forum's threads have no value in the scientific world, but now, this mention in Waldinger's  review article gives this hypothesis a worldwide scientific credibility.

Elsewhere in the article, it is written that ""To find the Ag in the seminal plasma that causes the auto-immune reaction is of utmost importance for a better understanding of and finding an effective treatment of POIS.", Ag= antigen .  I feel this means that current work of Dr Waldinger on POIS is about searching for the possible antigen in prostate fluid.  We heard about an ongoing search of Dr Waldinger.  I suppose this is the purpose of this current study.  I also feel that this review article is a way to summarize what is known up to now about POIS and set the stage for the results that may come next year from his current study.     

It is also written in this review article that " The physical and cognitive symptoms of POIS are produced by some specific cytokines that are released by the immunological reaction occurring during ejaculation." and " POIS is not associated with increased total serum IgE concentrations. On the contrary, there are indications that POIS is triggered by specific cytokines that are released by an auto-immune reaction to the man’s seminal fluid.".   The part saying that IgE are normal in POIS sufferers has been published in his 2004 paper.  But I am not aware that Dr Waldinger has ever written before about specific cytokines being the possible mediators of the hypersensitivity reaction.  He does not define further which cytokines he refers to, but by digging reference 2 and reference 3, at the end of the article, you can get some idea of what he has in mind.

From reference 2 in the article ( Vial T, Descotes J. Clinical toxicity of cytokines used as haemopoietic growth factors. Drug Saf 1995;13:371-406. [Crossref] [PubMed] ), you read:  " Flu-like and constitutional symptoms, sometimes dose-limiting, have been reported with IL-1, IL-3, IL-4 and IL-6, while M-CSF was occasionally associated with such adverse effects. More specific adverse events, also frequently considered as dose-limiting toxicities, include hypotension with IL-1, severe headache or skin rash with IL-3, and nasal congestion and gastroduodenal lesions with IL-4. Severe capillary leak syndrome has been reported only with IL-4."  Many of these effects have been mentioned as POIS symptoms, and considering the complexity of the immune system, it may be considered that the general idea is valid, and may explain many different symptoms not listed here.

I think you may have already noticed that I am very enthusiastic about the auto-immune hypothesis of Dr Waldinger, and that I have myself written a lot about my opinion on the role of pro-inflamatory cytokines as a cause of certain clusters of POIS symptoms, so these affirmations by Dr Waldinger about the role of cytokines in the physiopathology of POIS are just further reinforces my opinion.


Thanks again jimmy!

[demografx]

Thanks, Quantum,  for creating this thread. The subject deserves its own space.

[Quantum]

By carefully reading the new review article of Dr Waldinger, you can notice a change in focus in his words, which seems to be based on a slightly different view of what POIS is.

In particular, it seems that Dr Waldinger will not invest anymore time in the hyposensitization treatment of POIS with autologous semen, citing that it is espensive and time-consuming, and that insurance company do not pay for it neither. But this is also in line with him stopping to talk about POIS as an "allergy", and now rather as an auto-immune disease  ( and as you may know, auto-immune diseases are not treated with desens).  He seems now to focus on the search for the antigen that would be at the base of the auto-immune reaction ( stating he think it is in the prostatic fluid ) , and he is also speaking about the inflammatory cytokines produced by this initial reaction, that are eventually causing symptoms everywhere in the body, including in the brain  ( he still talks about "cognitive" symptoms, but for a POISer like me that has much emotional symptoms and absolutely no cognitive symptoms, this is innacurate.... I would prefer that he talks about central nervous system symptoms, or brain symptoms, or cognitive and affective symptoms, or something along these lines)   

I may be wrong, but I would be surprised to hear Dr Waldinger talking about the desens protocol again, or hear him refer again to POIS as an "allergy" , and expect that his current and future publications will talk about possible antigen in prostatic fluid,  and that from now on he will refer to POIS as an auto-immune disease, and may talk about the main pro-inflammatory cytokines he thinks are causing the different POIS symptoms (cytokines produced once the antigen has activated the auto-immune reaction ). 

[Limejuice]

Thanks for your interpretation and comments about Dr Waldinger's latest article. You make understanding medical particulars easier for non-medical people

[Quantum]

Thanks for your interpretation and comments about Dr Waldinger's latest article. You make understanding medical particulars easier for non-medical people

Thanks, Limejuice !  I know that medical science have many specific terms and that scientific articles have their own way and rules of presenting things, so I try to make it easier to understand, since I have the chance to have studied in a health field.

In this article, I think it was a very subtle change.  I feel Dr Waldinger wanted to slowly take distance with his previous work and opinions about POIS, and at the same time, make it feel like it is a continuum, just an evolution of his views.  I may be wrong, but his next publications will show if he have put aside the "allergy" term and the hyposensitization treatment of POIS with autologous semen. If his next paper is clearly about:

- POIS as a auto-immune disease,
- about antigen identification in POIS ( and search for it in prostate fluid),
- about blood tests for pro-inflammatory cytokines levels during POIS attacks, and for other
- inflammation markers like C-reactive protein ( CRP) or erythocyte sedimentation rate ( ESR),
  which are usually high in auto-immune diseases,

then that will confirm that he has really changed his views on POIS and on how to eventually treat it.


(note:  for those wondering about what cytokines are, I have started a thread about this subject at http://poiscenter.com/forums/index.php?topic=2350.new#new , hoping this will help to keep you all interested in what is going on in POIS studies )

[demografx]

Glad to see there's hope for a "reformed Dr W"

[Bulbo]

Hi guys
quantum's ideas and perceptions are brilliant..... He is a clever person like stef and most others in the forum

[Quantum]

Thanks Bulbo for these very positive and supportive words !

[Quantum]

re-posted from another thread  ( http://poiscenter.com/forums/index.php?topic=426.msg19952#msg19952 ), but linked to this review article:

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http://www.mensjournal.com/health-fitness/articles/are-you-suffering-from-post-orgasmic-illness-syndrome-w448239

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This freelancer may know Steven Blum, he has also written for Vice magazine, like Mr.Blum.  Good exposure for POIS, we will never have too much of it.

It would have been better still if he had mentioned poiscenter in his article, though.

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I couldn't find the date when it was published. But it's great to see POIS in such a mainstream publication!

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It is quite recent, because it cites the content of Dr Waldinger review article of 2016-07, him abandoning  desensitization, and stopping any reference to POIS as an allergy, and now describing POIS as "a systemic auto-immune reaction expressing itself in multiple physical and mental problems".  So this article has been out somewhere between August and November 2016.

The author seems to have had access to an interview with Waldinger after the review article was out, because he quotes him saying those things in his own words, not in the article's phrasing.  Anyway, these comments confirm what I have understood from his review article, and have shared here at http://poiscenter.com/forums/index.php?topic=2346.msg19538#msg19538  ( up on this thread you will also find the link to Dr Waldinger's July 2016 review article on POIS ).

There seems to be another snippet from this unknown interview when the article says, referring to desens, " Waldinger once tried to treat POIS (in two of the 45 Dutch patients suffering from the condition he’d identified) using a method designed to reduce allergy symptoms — which he credits with causing the POIS-as-allergy confusion. " ( my emphasis)   This sounds like the author have talked directly to Dr Waldinger, and that Dr Waldinger has somehow admitted that he is responsible for the inappropriate and limiting use of the word "allergy" when referring to POIS,  and that it should have been described from the start as a complex immune reaction, or a auto-immune overreaction.  By using desens to treat POIS, a method used to treat strictly allergic reactions, he have caused the confusion.  As I have already wrote, auto-immune diseases are not treated with desensitization, so the change in his view on POIS have called for a change in therapeutic strategy. 

So now that he clearly sees POIS as a auto-immune reaction, he must be searching for the antigen, the substance that causes the immune reaction, and eventually, the main markers that go up at the start of this overreaction.  If you can identify the first pro-inflammatory immune messengers to go wild, you will try to stop them at the very start, and then prevent the immune fire to spread everywhere in the body.  Auto-immune diseases manifest as flaring disorders, and in the case of POIS, you will have a flare each time you ejaculate.  A flare is more than just an allergic reaction, because it can go on long after the exposition to the allergenic substance is over, and new symptoms appear long after the start of the attack.  If you are allergic to cats, and you react to the presence of a cat, you will leave, go home, take an antihistamine, and the symptoms will slowly subside - no way you're going to be bed-ridden for a week and develop all sorts of systemic symptoms in the coming days - this type of complications is what happens with an auto-immune flare up, and that sounds a lot like what POIS is.

Let's hope Dr Waldinger finds the antigen and a few immune markers as well in his current study.

[Spartak]

Hi guys,
Are there any updates since then?

[demografx]

It seems that there is new publication on POIS:
https://tinyurl.com/53kzbv39

Thanks a lot for the link, Jimmy!  It has not been posted here yet.  And it is interesting!…

I recently asked Quantum to suggest a link to show my cardiologist - - to establish with the doctor my POIS condition and ask a question about my POIS treatment.

Quantum suggested the above link:
https://tinyurl.com/53kzbv39

And it worked!

My cardiologist wrote back that he thought my TRT treatment of my POIS (supervised by my endocrinologist) with Androderm testosterone patches probably has little problematic effect on my heart condition (I have coronary heart disease with a 5-way bypass, open heart surgery 10 years ago).

Thank you, Quantum!

[demografx]

Re: Quantum’s recommended link to explain POIS to your DOCTORS

I recently asked Quantum to suggest a POIS link to show my cardiologist.

Quantum suggested this link:
https://tinyurl.com/53kzbv39

And it worked!

Thank you, Quantum!

My increased dose of TRT-for-POIS-onset has ALSO been approved - - today - - by my Endocrinologist, to whom I sent Quantum’s link.

Thanks again, Quantum!

[Quantum]

Re: Quantum’s recommended link to explain POIS to your DOCTORS

I recently asked Quantum to suggest a POIS link to show my cardiologist.

Quantum suggested this link:
https://tinyurl.com/53kzbv39

And it worked!

Thank you, Quantum!

My increased dose of TRT-for-POIS-onset has ALSO been approved - - today - - by my Endocrinologist, to whom I sent Quantum’s link.

Thanks again, Quantum!

I am glad that this review article had been positively perceived by your cardiologist, Demo !