Author Topic: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)  (Read 15074 times)

Muon

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New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle

Does anyone got access to it? I would like to read it. Do we have a thread that compile POIS papers? I have seen nanna1 posting something similar but forgot which thread.

demografx

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Thanks, Muon.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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I asked Quantum about links he knows of. Also the Welcome Page has links to paper abstracts.
« Last Edit: October 24, 2019, 03:46:17 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Quantum

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New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle

Does anyone got access to it? I would like to read it. Do we have a thread that compile POIS papers? I have seen nanna1 posting something similar but forgot which thread.


Yes Muon, I keep a list of POIS articles here : http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182 

I have added this new case study to my list .

It is the 3rd POIS related article in less than a year :)
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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It is the 3rd POIS related article in less than a year :)
I’m glad you don’t include the garbage articles that come through on Google’s “popular” POIS articles
:)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle

Does anyone got access to it? I would like to read it. Do we have a thread that compile POIS papers? I have seen nanna1 posting something similar but forgot which thread.


Yes Muon, I keep a list of POIS articles here : http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182 

I have added this new case study to my list .

It is the 3rd POIS related article in less than a year :)

Thanks Muon, Quantum. Sent to NORD’s POIS researchers.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Nas

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"Therefore, etiology of POIS remains unclear."
:(

"The patient was submitted to specific immunotherapy with transient clinical response and was referred to a psychologist but did not demonstrate clinical improvement of symptoms."

And how are we supposed to trust that this psychologist did the right thing? He could've just bombarded the guy with depression medications and therapy and then write him off as not improved.
« Last Edit: October 25, 2019, 04:23:24 AM by Nas »

Muon

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''Adding more pieces to puzzle''. What pieces? Or is this clickbait?

Quantum

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"Therefore, etiology of POIS remains unclear."
:(

"The patient was submitted to specific immunotherapy with transient clinical response and was referred to a psychologist but did not demonstrate clinical improvement of symptoms."

And how are we supposed to trust that this psychologist did the right thing? He could've just bombarded the guy with depression medications and therapy and then write him off as not improved.

Well, it is just a case study, with only one case, so not much to learn from that for us, per se, in the abstract ( would be interesting the read the complete article, though, and see what we can learn from the specific tests done and reported).

However, I find this case report very useful to help the POIS research make a step ahead,, because it will help a bit to broaden the scope of the search for the cause of POIS.   Until now, most researchers will do a scientific articles review, and will stumble upon Waldinger articles and all the other articles mentioning "allergy to own semen" as "hypothesis #1", which it is, historically.  But even Waldinger, in his 2016 review, have changed his mind about this "hypothesis #1" and had moved from "allergy" to stating that "POIS is an auto-immune disorder" ( see http://tau.amegroups.com/article/view/11107/11778 , last section before "Summary", at the end).  Unfortunately, most researchers, in their review, miss this important change, and still base their tests on hypothesis #1, instead of this new hypothesis #2, or on any other mentioned hypothesis in the literature, like the vagal nerve hypothesis.

So, I am glad that this short case states rather boldly that " Immunological investigation did not confirm the previous hypothesis of a hypersensitivity reaction".  It will help further research to let go of the limiting hypothesis that POIS is an allergic reaction to semen ( and this have been going for years, even if the Chinese study have reported false positive, that is, men reacting to prick test to their own semen, but not having POIS !!!   Science is slow.... and researchers reviews are not always exhaustive...).


The reported failure of psychological test is positive too, in a sense.  This is a way to say that there is, really, a biological, neurological, hormonal or immune cause, and it has to be found.    It is not "all in our head" ( even if it can be to some extent, and more in some cases than others), and if we find the physical/physiological aspects of the illness, we will ba able to get some relief for POIS sufferers.


Our upcoming study, the one funded by poiscenter, will clearly put a new hypothesis on the scientific, medical map.

I will be very, very happy when the popular, simplistic articles found in non-scientific webzines, will finally stop to keep alive the old "hypothesis #1", reporting it like if it was a proven fact, that POIS is an allergy to own semen ( it is not a proven fact !   I , for one, am not allergic to my own semen) .  That is what hurts POIS research the most, in my opinion !  It will be a positive change when these popular culture articles will provide a list of different hypothesis AND will state that desens is not used anymore, hypothesis #1 is a thing of the past, POIS is not an allergy, and research is now going forward with other hypotheses !!!

( if any freelance webzine writer listening, please go ahead and inspire yourself from my above comments ! )
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Quantum

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''Adding more pieces to puzzle''. What pieces? Or is this clickbait?

No, not a clickbait, it is their way to say that " Immunological investigation did not confirm the previous hypothesis of a hypersensitivity reaction".  Most researchers, like I said in my previous message, are stuck with the idea that the "allergy to semen" hypothesis is the only hypothesis for POIS, so now, they are "puzzled" to see that it is not valid, according to their tests.   

It is sad that, just because a hypothesis have been around for many years, and have been repeated over and over, that it kind of becomes accepted as a fact.   But, nobody had never checked this allergy theory with actual immunological tests.   This old hypothesis has been founded ONLY on the dubious skin prick tests ( and Chinese study showed that it was not at all valid and specific).  This is a case of bad science / incomplete testing , which is due to neglect by the scientific community in general, when nobody debate, test or discuss your ideas, and everyone is citing what the first one has come up with, not knowing better.  Now, a study finally puts this hypothesis to a serious test, and voilà, it does not seem to verify the old allergy hypothesis,  So now, the average POIS researcher is left with a more complicated puzzle than before:  you have a rare syndrome, we have no clear idea on how to manage it, and the (seemingly) only hypothesis about its cause has just proven to be wrong.... so, in their mind, nothing is left, no lead to follow, back to the void ..... 

Actually, some new ideas are now emerging from this apparent void...at last  :)     

« Last Edit: October 25, 2019, 09:35:42 AM by Quantum »
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Nas

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The reported failure of psychological test is positive too, in a sense.  This is a way to say that there is, really, a biological, neurological, hormonal or immune cause, and it has to be found.    It is not "all in our head" ( even if it can be to some extent, and more in some cases than others), and if we find the physical/physiological aspects of the illness, we will ba able to get some relief for POIS sufferers.



The problem I have with this, is clumsiness. I think most of us have a bad experience with psychologists since they always write us off as not ill, or it's "all in your head".
A good psychological assessment should compare psychological/neurological symptoms with potential neurological factors.
For example when you have depression a psychiatrist would prescribe you an SSRI; assuming that you have low serotonin.
If you have ADHD he will prescribe you a DRI or a NRI. Assuming that these are also low.
In fact psychologists sometimes take genetic and serum tests to treat rare cases of treatment resisting depression.
In short a psychiatrist is not a therapist. He should always have a more accurate etiological assessment that should definitely give a better insight of the situation.
That's why I have a hard time believing he was assessed by the psychiatrist properly.
« Last Edit: October 25, 2019, 09:53:32 AM by Nas »

Muon

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I agree completely with you there Quantum. There are enough ideas flowing around on this forum btw. They aren't only stuck at the allergy hypothesis but they are also stuck at a subset within that concept as in classical allergy, that is, mast cell activation via IgE. I'm curious to see if they have performed new tests which rule out certain things which the title could indicate with 'more pieces'. They might have done some new testing related to hypersensitivity/allergy, if that isn't the case then the paper is quite pointless.

Quantum

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It is the 3rd POIS related article in less than a year :)
I’m glad you don’t include the garbage articles that come through on Google’s “popular” POIS articles
:)

Surely not, indeed... that thread (  http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182   ) is for a list of scientific articles only, articles you can show your physician, like the title says.   They are referenced, and published in a medical journal. That is what doctors look at when they want information.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Quantum

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I agree completely with you there Quantum. There are enough ideas flowing around on this forum btw. They aren't only stuck at the allergy hypothesis but they are also stuck at a subset within that concept as in classical allergy, that is, mast cell activation via IgE. I'm curious to see if they have performed new tests which rule out certain things which the title could indicate with 'more pieces'. They might have done some new testing related to hypersensitivity/allergy, if that isn't the case then the paper is quite pointless.

I looked for an access to the whole article, but there is a paywall...
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Muon

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Yes that's the reason I asked if anyone got acces to it. Perhaps some researchers here could share it via private poiscenter message.

Quantum

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The reported failure of psychological test is positive too, in a sense.  This is a way to say that there is, really, a biological, neurological, hormonal or immune cause, and it has to be found.    It is not "all in our head" ( even if it can be to some extent, and more in some cases than others), and if we find the physical/physiological aspects of the illness, we will ba able to get some relief for POIS sufferers.



The problem I have with this, is clumsiness. I think most of us have a bad experience with psychologists since they always write us off as not ill, or it's "all in your head".
A good psychological assessment should compare psychological/neurological symptoms with potential neurological factors.
For example when you have depression a psychiatrist would prescribe you an SSRI; assuming that you have low serotonin.
If you have ADHD he will prescribe you a DRI or a NRI. Assuming that these are also low.
In fact psychologists sometimes take genetic and serum tests to treat rare cases of treatment resisting depression.
In short a psychiatrist is not a therapist. He should always have a more accurate etiological assessment that should definitely give a better insight of the situation.
That's why I have a hard time believing he was assessed by the psychiatrist properly.

I am not sure, Nas, that the patient was evaluated by a psychiatrist.  The abstract talks about a psychologist  ( so not a MD that has specialized in psychiatry, but a psychotherapist.)

My guess is that they have tried a short term, behavioral therapy, with 10 to 20 sessions, probably one to two session a week for a few months.   It is not possible that the patient went through a 3 to 5 years analytic therapy, considering the scope of the article. 

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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It is the 3rd POIS related article in less than a year :)
I’m glad you don’t include the garbage articles that come through on Google’s “popular” POIS articles
:)

Surely not, indeed... that thread (  http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182   ) is for a list of scientific articles only, articles you can show your physician, like the title says.   They are referenced, and published in a medical journal. That is what doctors look at when they want information.

Yes, that is why I severely restricted reporting the Google POIS Alerts that I receive :)

Thank you, Quantum.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle

Does anyone got access to it? I would like to read it. Do we have a thread that compile POIS papers? I have seen nanna1 posting something similar but forgot which thread.


Muon, I already asked our researchers.

You could also try emailing the authors. First click “Show all authors”, right below the article headline. Then co-authors Santos and Galvão email addresses are shown, look for the envelope icons.
« Last Edit: October 25, 2019, 11:48:15 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Ah ok, thanks Demo.

Nas

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Ok yeah that makes sense quantum.
I just wish there would be a full psychiatric or neurological assessment of a POIS patient. It could help many of us a lot.