POISCENTER
General Category => POIS Research => Topic started by: fernab on March 28, 2019, 12:42:03 PM
-
All forum members who already know POIS is not due to autologous semen allergy can post here any reference to places in this Forum. Or serious web sites on the internet that state clearly it is NOT an auto-allergy.
I have just found this web site stating it:
https://www.ncbi.nlm.nih.gov/m/pubmed/25630453/
Original copy: https://www.jsm.jsexmed.org/article/S1743-6095(15)30963-2/fulltext
Apart from that, two well known members of this Forum told me that it was already proven by a chinese group of Drs or Researchers (can be seen who they are in previous links).
This two members if I am not wrong were Observer and Quantum. They warned me about that just recently added to this Forum. Because I wanted to do my own auto allergy pric test. Indeed I did It before they warned me about this test was not useful at all.
-
"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. Indirect clinical evidence suggests that the antigen (Ag) triggering the POIS systemic reaction is not bound to spermatozoa but to seminal fluid produced by prostatic tissue." (Waldinger, 2016)
"the mean serum total IgE in the non-atopic males was 27 kU/L (range, 6?78 kU/L), indicating that in these men this immunological marker was normal" (2016)
Ref: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001999/
-
"Skin prick tests and intracutaneous tests with autologous diluted semen with negative results were performed. Immunoblotting (https://www.sciencedirect.com/topics/medicine-and-dentistry/immunoblotting) and western blot (https://www.sciencedirect.com/topics/medicine-and-dentistry/western-blotting) of the patient's autologous semen showed negative results...
...To complete the study, we intended to rule out other possible causes such as urological, hormonal, or neuropsychiatric disorders."
-Negative allergy study in a case of postorgasmic illness syndrome (POIS) (N. Depreux, et al, 2018) (https://www.sciencedirect.com/science/article/pii/S1698031X1730064X)
Here is a useful POIS literature review (post (https://poiscenter.com/forums/index.php?topic=2932.msg27717#msg27717)).
-
...there are no IgE concentration so maybe they're already aware of that?
Let’s not assume anything.
I wouldn't, but that's what POIS papers say. Beside the fact that it doesn't make sense that you have IgE concentrations for your own semen.
Nas, I meant let’s not assume that the investigators are already aware of that.
-
Fernab I think every single paper on POIS refuted the involvement of serum IgE concentrations in POISers.
Naive question perhaps: does IgE concentration mean that autologous semen allergy exists or doesn’t? Thanks.
-
IgE is the type E of inmunoglobuline. There are 5 different types A, G, M, D and E. Ig is the abreviation of Inmunoglobuline. Inmunoglobuline type E is the one involved in allergies and also some types of infections (for instance some parasitic infections). Inmunoglobulines are antibodies from the inmune system. When a Dr says POIS is not IgE mediated he is also saying POIS it's not caused by an auto-allergy.
-
Thank you, fernab.
-
fernab, one problem I see is the sample size of the Chinese study. Are there any studies with meaningful, projectable samples to adequately refute auto-allergy?
-
To be honest, It is something I assumed as true. As when I entered this Forum around one year ago... Observer and Quantum told me that POIS was already proven not to be an auto-allergy. Apart from that. The first Dr who told me that maybe my Illness could be POIS, told me that it was not IgE mediated.
Even though he told me that. I remember I wanted to check it myself with my own seminal sample. Doing a prick test. So I went to a different allergologist and did It with him. And my own seminal sample on my skin resulted to be Negative.
So I shared this info with Observer. And he told me that this test was not useful at all. And that It was already proven by a chinese group. I accepted that without further ado. And after that I also read a post of Quantum saying almost the same.
And of course my own negative result....
Maybe the information nanna1 gave us can clarify It??
Edit: Don't have much more that serves as strong evidence....
-
Thanks, fernab!
I’m just concerned about asking our investigative team to drop the auto-allergy route because of merely a handful of cases. That won’t be sufficient evidence. Personally, I am deeply skeptical of auto-allergy, but that’s not enough.
-
If you think that the number of poisers for which the auto allergy was negative it is important to be big enough to be able to confirm, that it is not an auto-allergy.... Maybe It is worthy to re-check it again. Except in the case there is already a scientific and serious research result stating it. But honestly, apart the web site I found and what nanna1 and Observer, Quantum, and others told me I don't know were to search for it. That is the truth.... So maybe It is something to openly talk with the investigative team.....
What do you think?
Any other opinions from other members?
-
By the way Demo, have you asked Dr L. If their intention was to re-check that It is not an auto-allergy?
Maybe It is not their intention.... It is as easy to ask her... don't you think so?
-
fernab, thanks for soliciting more members’ opinions and input.
Is there a not-too-difficult way to see the *total number of POISers* who comprise the negative-auto-allergy Group? Also, is there any credible data that support the possibility of a positive auto-allergy outlook?
-
By the way Demo, have you asked Dr L. If their intention was to re-check that It is not an auto-allergy?
Maybe It is not their intention.... It is as easy to ask her... don't you think so?
I’d like to ask as little as possible at this time. They have not officially started, and are weeks away from UNL authorization, so they were magnanimous in giving that first reply to your question.
-
I’d like to ask as little as possible at this time. They have not officially started, and are weeks away from UNL authorization, so they were magnanimous in giving that first reply to your question.
Ok. I understand.
-
Is there a not-too-difficult way to see the *total number of POISers* who comprise the negative-auto-allergy Group? Also, is there any credible data that support the possibility of a positive auto-allergy outlook?
Don't know were to search that info Demo. Could try to read posts in this Forum. But without any guarantee that we will find a sufficient and adequate number to consider it conclusive. How many cases would be necessary?
It could take a lot of time to check in all the Forum this info. And in the case we could find It here. How many cases would be necessary? Can we accept them as valid? As a scientific point of view???
-
It just means adding up the number of POISers in the studies. I think the Chinese study is only...1!
Let’s just assume the total number is...too low! (I’m sure it’s not even 25 POISers), so the question remains: do we have any other credible hypotheses, ideas, etc., that warrant keeping the auto-allergy alive and worth re-analyzing???
-
Don't know were to search that info Demo. Could try to read posts ...
Not necessary. I just meant to add up the # of study subjects :)
-
Maybe other members can add their opinion.
I do not have the appropriate knowledge to be able to answer that question from a serious and rigorous point of view to be taken into account scientifically ... and when in doubt I would try to check it again following a valid and solid scientific method.
That is my humble opinion Demo.
-
Don't know were to search that info Demo. Could try to read posts ...
Not necessary. I just meant to add up the # of study subjects :)
Ok, the chinese case is 1... I will try to follow other references added by nanna1 and will try to sum they up.
Ok?
-
Great!
-
Keep in mind that - - whatever we come up with - - it’s still the investigators’ decision whether or not to pursue auto-allergy.
-
Keep in mind that - - whatever we come up with - - it’s still the investigators’ decision whether or not to pursue auto-allergy.
I just sent the above to Drs Tierney and Prause.
-
Hey Demo and fernab,
I wrote a review article on POIS (see POIS literature review (https://poiscenter.com/forums/index.php?topic=2683.msg23777#msg23777)). It talks about some of the auto-allergy stuff that people have done as well as everything else. If you have anything to add/subtract or any question, I would love to hear it.
-
Thank you, nanna1!
That was very helpful!
Our investigators are reading this page :)
-
From the NORD researchers (thank you fernab, nanna1, et al!)
We intend to test both models (the autoimmune and autonomic/endocrine/inflammation models) as rigorously as possible. We have included the auto-immune hypothesis as (a) it is currently one of the few models that has been formally proposed and documented in the research literature, and thus any reviewer of our research would want to know why we didn’t consider it, and (b) we see evidence of POIS patients (including some on the POISCenter forum) continuing to seek treatment for a perceived auto-allergy, so there are at least some members of the community who will benefit from additional research into the model. Both for the purposes of being systematic, and to show external reviewers (and any future funders we approach to continue the research), we need to test the “standard” model against anything new we propose.
Luckily, the means by which we are testing the auto-allergy model should add no additional burden to the participants (or the research funds) as we have constructed our study to test head-to-head our hypothesized model (the autonomic/endocrine/inflammatory model) against the “standard" hypothesis (i.e., the auto-allergy model). The same measures will be used in either case - if they go one way it will support our model, and if they go the other way it will support the auto-allergy model.
Cheers
Dr L
-
Great! At this point, that seems like the reasonable next step to studying the POIS problem. That info from Dr L was very appreciated.
-
Thank you, nanna1, for your positive endorsement!
-
I think this will be a serious and rigorous way they will carry out without leaving any possible cause and at the same time, giving continuity to previous studies.
Sounds great. I agree with nanna1!
-
And I agree with fernab :)
fernab, nice job coordinating the auto-allergy theory info for us!
-
Great! At this point, that seems like the reasonable next step to studying the POIS problem. That info from Dr L was very appreciated.
I passed your comments on to the investigative team.
-
I was recently informed that there are still POIS papers discussing POIS as a semen allergy. So I wanted to [...]