Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => Articles, References and Links => Topic started by: Muon on October 24, 2019, 10:56:38 AM

Title: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 24, 2019, 10:56:38 AM
New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835)

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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 24, 2019, 03:27:01 PM
Thanks, Muon.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 24, 2019, 03:32:51 PM
I asked Quantum about links he knows of. Also the Welcome Page has links to paper abstracts.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 24, 2019, 10:09:11 PM
New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835)

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 :)
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 12:09:44 AM
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
:)
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 12:26:46 AM
New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835)

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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Nas on October 25, 2019, 04:19:39 AM
"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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 25, 2019, 06:39:24 AM
''Adding more pieces to puzzle''. What pieces? Or is this clickbait?
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 25, 2019, 08:52:29 AM
"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 ! )
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 25, 2019, 09:03:39 AM
''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  :)     

Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Nas on October 25, 2019, 09:52:00 AM

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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 25, 2019, 09:53:19 AM
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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 25, 2019, 10:00:51 AM
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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 25, 2019, 10:03:14 AM
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...
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 25, 2019, 10:15:30 AM
Yes that's the reason I asked if anyone got acces to it. Perhaps some researchers here could share it via private poiscenter message.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 25, 2019, 10:42:23 AM

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. 

Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 11:25:34 AM
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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 11:26:45 AM
New paper as of October 2019:

Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835)

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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 25, 2019, 11:52:37 AM
Ah ok, thanks Demo.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Nas on October 25, 2019, 12:16:28 PM
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.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 02:54:53 PM

Ah ok, thanks Demo.


From our research friends:

“Sci-Hub is a great resource for this kind of thing:

https://sci-hub.se/10.1080/0092623x.2019.1677835

And for future reference: https://sci-hub.se/ “
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 03:08:49 PM
I went to the article to request a free copy (academic), but I was stopped at username/password, I don’t have one :(

But it seems the right path.

Maybe you or Quantum can figure it out!
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 05:11:10 PM
Muon, sorry if I accidentally hit lock topic. I hit unlock.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on October 25, 2019, 05:32:27 PM
Muon, sorry if I accidentally hit lock topic. I hit unlock.
Hahah no problem. I have sent an email to the author just before you posted the link and received an email back from the author of that paper just after I got the paper from the link above.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 25, 2019, 06:28:36 PM
Wonderful, Muon!
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on October 26, 2019, 05:56:43 PM

Ah ok, thanks Demo.


From our research friends:

“Sci-Hub is a great resource for this kind of thing:

https://sci-hub.se/10.1080/0092623x.2019.1677835

And for future reference: https://sci-hub.se/ “


Thanks for this free access link !

So, I have just read the whole article, and in my book, it is a confirmation that desensitization with autologous semen does not work, or at least, does not work in all of POIS cases  ( in fact, is there anyone that had lasting, significant results, with desens , ever ?  I am not aware of any case )

Also, this case report, with two control patients, confirm that skin prick test with own semen can be positive for ANY man, even when he does not have POIS.  Let's hope every POIS researchers, at last, will forget about skin prick tests !!!   And, hopefully, about the allergy theory.  So we can carry on to something new, and find useful relief for a majority of POIS sufferers.



Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on October 26, 2019, 06:30:34 PM
Quantum, I passed along your post above to Drs. L&P
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: certainlypois2 on October 26, 2019, 09:21:58 PM

Ah ok, thanks Demo.


From our research friends:

“Sci-Hub is a great resource for this kind of thing:

https://sci-hub.se/10.1080/0092623x.2019.1677835

And for future reference: https://sci-hub.se/ “


Thanks for this free access link !

So, I have just read the whole article, and in my book, it is a confirmation that desensitization with autologous semen does not work, or at least, does not work in all of POIS cases  ( in fact, is there anyone that had lasting, significant results, with desens , ever ?  I am not aware of any case )

Also, this case report, with two control patients, confirm that skin prick test with own semen can be positive for ANY man, even when he does not have POIS.  Let's hope every POIS researchers, at last, will forget about skin prick tests !!!   And, hopefully, about the allergy theory.  So we can carry on to something new, and find useful relief for a majority of POIS sufferers.

What were they saying about  NK cell subsets and activation markers.
All I understood was the result in pois patient is seen in some psychiatric problems.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: nanna1 on November 03, 2019, 11:34:52 PM
What were they saying about  NK cell subsets and activation markers.
All I understood was the result in pois patient is seen in some psychiatric problems.
They measured deficient (low) NK cells and B cells in the patient. These immune deficiencies are see in some psychiatric disorders.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 14, 2020, 05:36:04 PM
"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.

Hi people!! I didn't know this post. I just see it right now. I'm the patient of this brazilian study, but I didn't read yet...

Abou what you say, Nas, I didn't use any medicantion. I was indicate to a psychologist, not a psychiatrist. In my opinion, a psychologist is very useful for POIS patients improve and understand the best ways to coexist with POIS. But Pois is not a psychologist condition, so is not a cure. But I think all people should go to a psycologist for some time; it is a very good thing.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 14, 2020, 05:47:41 PM

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.


In fact, my therapy was a few months, I think six, one day per week. It was a gerat therapy, with a psychoanalytic aproach. I like it a lot and I think the therapy helps me to accept POIS like it is; we don't have a choice, so we have to live with it.... But the therapy is not a Pois treatment, only a help...
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on May 14, 2020, 06:27:49 PM
Hi, fidalgo :)
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Quantum on May 14, 2020, 09:50:01 PM

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.


In fact, my therapy was a few months, I think six, one day per week. It was a gerat therapy, with a psychoanalytic aproach. I like it a lot and I think the therapy helps me to accept POIS like it is; we don't have a choice, so we have to live with it.... But the therapy is not a Pois treatment, only a help...


Thanks for the information, Fidalgo !
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Nas on May 14, 2020, 10:22:37 PM
Thanks for the insight Fidalgo.
Can you update us on your condition? Are you POIS free at the moment? What regiment are you still taking to alleviate POIS? 
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on May 15, 2020, 12:35:28 AM
fidalgo: he is a Great example of our *early*
homegrown POIS Research donor/contributors!

Hi, fidalgo :)


I just gave $100.00 for the POIS fund and I will still be donating this amount for each of the next 12 months. I expect that I could give more in the next months, but this amount I guarantee.

I´m giving for POIS because this disease screw up my life and I know that, even that we have chance to descover a cure for our own, our chances will be a lot more with especialist researchs and methods.

I know that a lot of people here don´t have a lot of money but the situation isn't easy for no one. For me, in particular, is more expensive because brasilian coin has a half the value of dolar. Let´s go people, let´s donate.




(http://www.emofaces.com/en/emoticons/b/brazil-flag-waving-emoticon-animated.gif)

THANK YOU, FIDALGO!!

fidalgo, your generosity is sloooooooooowly paying off!!
:) :)

NIH is spending $41.46 billion in 2020 on medical research. And once we’ve published the current POIS study, our hope is to get funded by NIH!

And our current POIS scientific researchers are totally committed to help us get as far along as possible on this path TO A CURE.

Many thanks again!!
Demo
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 15, 2020, 06:14:21 PM
Thanks for the insight Fidalgo.
Can you update us on your condition? Are you POIS free at the moment? What regiment are you still taking to alleviate POIS?

No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.
The imunothetapy is the best improve I ever had with Pois,  but was temporary. I think there is something in imunotherapy related with POIS and must be studied.

For aleviate my POIS I use Nasonex and I make gargle with Water and Salt. I only have cold showers,  dont drink coffee,  and I avoid things that makes my POIS worst.

One thing that is not writen in that study is that my imunotherapy was made years ago. I dont remind the exact year, but, in the study say that was 25, and Iam now with 33, s? it must be 8 years...

So,  I dont indicate for anybody,  but,  what I've done in this years was imunotherapy by my self. I have the same results of the research: it works for some time, and then the symptons come back.... what I do is immunotheapy for an year, more and less,  when symptons turn back I stop the threatment. When the symptons turn back equal in the beginning of the threatment,  in 2 years, more less, I start the imunotherapy again...

This, what I do, it's too risky and I dont indicate for anybody. I only do it because I already know how my body answer the first threatment and,  even so, is risky.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: berlin1984 on May 16, 2020, 04:46:20 AM
No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.
The imunothetapy is the best improve I ever had with Pois,  but was temporary. I think there is something in imunotherapy related with POIS and must be studied.

So it is you who is mentioned in this thread here (https://poiscenter.com/forums/index.php?topic=3151.msg31890#msg31890)?

If yes maybe you could read that thread and give your input there :-)
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on May 16, 2020, 07:33:44 AM
No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.

Reminds me of MCAD patients who lose their response to their previous successful therapy.

I think there is something in imunotherapy related with POIS and must be studied.

I agree. Very difficult to find out, there are tons of immunomodulators in seminal fluid.

For aleviate my POIS I use Nasonex and I make gargle with Water and Salt. I only have cold showers,  dont drink coffee,  and I avoid things that makes my POIS worst.

It contains mometasone https://en.m.wikipedia.org/wiki/Mometasone

Fidalgo, did you ever had moments where you felt great shortly after a subcutaneous injection for a short time window but the effect didn't persist?
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 16, 2020, 08:27:40 AM
fidalgo: he is a Great example of our *early*
homegrown POIS Research donor/contributors!

Hi, fidalgo :)


I just gave $100.00 for the POIS fund and I will still be donating this amount for each of the next 12 months. I expect that I could give more in the next months, but this amount I guarantee.

I´m giving for POIS because this disease screw up my life and I know that, even that we have chance to descover a cure for our own, our chances will be a lot more with especialist researchs and methods.

I know that a lot of people here don´t have a lot of money but the situation isn't easy for no one. For me, in particular, is more expensive because brasilian coin has a half the value of dolar. Let´s go people, let´s donate.




(http://www.emofaces.com/en/emoticons/b/brazil-flag-waving-emoticon-animated.gif)

THANK YOU, FIDALGO!!

fidalgo, your generosity is sloooooooooowly paying off!!
:) :)

NIH is spending $41.46 billion in 2020 on medical research. And once we’ve published the current POIS study, our hope is to get funded by NIH!

And our current POIS scientific researchers are totally committed to help us get as far along as possible on this path TO A CURE.

Many thanks again!!
Demo

8 years ago... A lot of time!!!
Yes, it's very good t? have more researchs t? find a cure. It's very unlikely that we find a cure by ourselves. We need more POIS researchs...
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 16, 2020, 08:40:04 AM
No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.
The imunothetapy is the best improve I ever had with Pois,  but was temporary. I think there is something in imunotherapy related with POIS and must be studied.

So it is you who is mentioned in this thread here (https://poiscenter.com/forums/index.php?topic=3151.msg31890#msg31890)?

If yes maybe you could read that thread and give your input there :-)

I going to read, but I don't think I can give inputs about... I don't have knowleage about the subjetct... And, in fact, ether the professor who made the research with me have clues about that exams... We need t? know if all Pois patients have the same distortion i have...
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: fidalgo on May 16, 2020, 09:24:14 AM
No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.

Reminds me of MCAD patients who lose their response to their previous successful therapy.

I think there is something in imunotherapy related with POIS and must be studied.

I agree. Very difficult to find out, there are tons of immunomodulators in seminal fluid.

For aleviate my POIS I use Nasonex and I make gargle with Water and Salt. I only have cold showers,  dont drink coffee,  and I avoid things that makes my POIS worst.

It contains mometasone https://en.m.wikipedia.org/wiki/Mometasone

Fidalgo, did you ever had moments where you felt great shortly after a subcutaneous injection for a short time window but the effect didn't persist?

"Fidalgo, did you ever had moments where you felt great shortly after a subcutaneous injection for a short time window but the effect didn't persist?"

I don't understand your question. I have a progressive improvement in my symptons until one year of the threatment. After that, my symptons start a progressively come back. Bu the subcutaneous injections of diluted semen never make me felt great,,, In reality, after the injections I have POIS symptoms an get tired for about five days, The improvement are progressively, not imediataly after the injections.... Is this answer your question?
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on May 16, 2020, 09:48:28 AM
Yes this does answer my question.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on May 16, 2020, 04:47:41 PM

8 years ago... A lot of time!!!
Yes, it's very good t? have more researchs t? find a cure. It's very unlikely that we find a cure by ourselves. We need more POIS researchs...


fidalgo, we are waiting for the coronavirus restrictions to lift, then we will commence with our first major POIS scientific research study! In Los Angeles. Soon! One that you, fidalgo, helped to fund!


(http://www.liberoscenter.com/wp-content/uploads/2020/02/Orgasm-makes-you-sick-1.png)

Please visit & explore!
https://tinyurl.com/ttffxz4


Also an article about the 2020 study and
who are the primary POIS researchers:
https://tinyurl.com/yb4dmjxr
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: demografx on May 17, 2020, 10:54:39 PM
8 years ago... A lot of time!!!
Yes, it's very good t? have more researchs t? find a cure. It's very unlikely that we find a cure by ourselves. We need more POIS researchs...


fidalgo, now you can add our new MAJOR contributor (link below) to our scientific POIS research efforts.

See, fidalgo? 8 years ago, you started a “snowball” effect! :) :)
https://tinyurl.com/y85suu2p
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Spartak on May 22, 2020, 07:13:26 PM
No, I'm not POIS free.  I had a great improve in my symptons in the first year of the threatment but,  I dont know why,  the symptons come back.

Reminds me of MCAD patients who lose their response to their previous successful therapy.

I think there is something in imunotherapy related with POIS and must be studied.

I agree. Very difficult to find out, there are tons of immunomodulators in seminal fluid.

For aleviate my POIS I use Nasonex and I make gargle with Water and Salt. I only have cold showers,  dont drink coffee,  and I avoid things that makes my POIS worst.

It contains mometasone https://en.m.wikipedia.org/wiki/Mometasone

Fidalgo, did you ever had moments where you felt great shortly after a subcutaneous injection for a short time window but the effect didn't persist?

"Fidalgo, did you ever had moments where you felt great shortly after a subcutaneous injection for a short time window but the effect didn't persist?"

I don't understand your question. I have a progressive improvement in my symptons until one year of the threatment. After that, my symptons start a progressively come back. Bu the subcutaneous injections of diluted semen never make me felt great,,, In reality, after the injections I have POIS symptoms an get tired for about five days, The improvement are progressively, not imediataly after the injections.... Is this answer your question?
For general POIS understanding, I think that this is an important fact that in your case injections of diluted semen in the blood caused you symptoms.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on May 23, 2020, 02:09:34 PM
For general POIS understanding, I think that this is an important fact that in your case injections of diluted semen in the blood caused you symptoms.
These are SC injections. It doesn't reach the peripheral vascular system (https://en.wikipedia.org/wiki/Peripheral_vascular_system) it goes straight to the lymphatic system.
Title: Re: Immunophenotypical Characterization of a Brazilian POIS Patient (15 oct 2019)
Post by: Muon on May 24, 2020, 11:16:04 AM
The Chinese man from the Chinese paper also has a history of rhinitis and react positive to house dust mites just like Fidalgo.

Fidalgo shows monocytosis which is seen in MCAS. Ref (https://ashpublications.org/blood/article/122/21/5240/12408/Characterization-Of-Common-Blood-Test)

"We speculate that POIS might be a psychological disorder without discarding other possibilities involving chemical imbalances in the brain or the hypothesis that modulation of the immune system can occur via neural and hormonal stimulation." Ref (https://sci-hub.tw/10.1080/0092623x.2019.1677835)

Muon speculates that POIS might be a manifestation of a mast cell activation disorder without discarding other possibilities involving chemical imbalances in the brain or the hypothesis that modulation of the immune system can occur via neural and hormonal stimulation.

Fidalgo, you could ask the researchers if they got the toolset to do a proper diagnostic workup for MCAS.
https://poiscenter.com/forums/index.php?topic=3236.0