Yes, the great heterogeneity of POIS' clinical presentation is problematic. ME/CFS faces the same problem if I'm not mistaken.
Postorgasmic Illness Syndrome (POIS)
- Thread starter Muon
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Amusing something like this exists!! Thanks for sharing
The Team of Doctors and Biohackers Who Seem to Be Successfully Treating “Long Covid”
POISers are being treated successfully with Niacin by the way (not curing it, they still have to take it regarding Orgasm). There seems to be some similarities in symptomatology between Long Covid and POIS.
Analysis of the Symptomatology, Disease Course, and Treatment of Postorgasmic Illness Syndrome in a Large Sample
Online survey (N=302 men). Respondents reporting improvement in symptoms with:
Niacin: 19 of 25 (76%)
Nonsteroidal anti-inflammatory medications (NSAIDs): 17 of 23 (74%)
Antihistamine: 44 of 90 (50%)
Selective serotonin reuptake inhibitors (SSRI): 18 of 47 (38%)
Benzodiazepines: 9 of 33 (27%)
Funny...low circulating serotonin in my brother.
POISers are being treated successfully with Niacin by the way (not curing it, they still have to take it regarding Orgasm). There seems to be some similarities in symptomatology between Long Covid and POIS.
Analysis of the Symptomatology, Disease Course, and Treatment of Postorgasmic Illness Syndrome in a Large Sample
Online survey (N=302 men). Respondents reporting improvement in symptoms with:
Niacin: 19 of 25 (76%)
Nonsteroidal anti-inflammatory medications (NSAIDs): 17 of 23 (74%)
Antihistamine: 44 of 90 (50%)
Selective serotonin reuptake inhibitors (SSRI): 18 of 47 (38%)
Benzodiazepines: 9 of 33 (27%)
Funny...low circulating serotonin in my brother.
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That's an interesting paper!
I note that there is a proposed set of diagnostic criteria for POIS:
In order for these diagnostic criteria to be compatible with orgasm-induced PEM, Criterion 2 must be changed to allow for the symptoms to start 24-48 hours after orgasm. (Of course, it's just a preliminary set of diagnostic criteria.)
The survey yielded these responses regarding Criterion 2:
Apparently, 15% of POIS respondents felt that Criterion 2 did not apply to them:
"The remaining respondents reported POIS symptoms at 6-12 hours (21, 7.0%) and >12 hours (24, 7.9%)."
In the discussion section, it notes:
"Although not all patients satisfied all 5 criteria, most patients satisfied 3 or more."
I note that there is a proposed set of diagnostic criteria for POIS:
In order for these diagnostic criteria to be compatible with orgasm-induced PEM, Criterion 2 must be changed to allow for the symptoms to start 24-48 hours after orgasm. (Of course, it's just a preliminary set of diagnostic criteria.)
The survey yielded these responses regarding Criterion 2:
Apparently, 15% of POIS respondents felt that Criterion 2 did not apply to them:
"The remaining respondents reported POIS symptoms at 6-12 hours (21, 7.0%) and >12 hours (24, 7.9%)."
In the discussion section, it notes:
"Although not all patients satisfied all 5 criteria, most patients satisfied 3 or more."
Nice highlights, yes I did encounter a few POISers on the forum where the onset is at 24 hours. I found this remarkable; go to table 1 and check the prevalence of fatigue under constitutional:
Often seen, rarely recognized: mast cell activation disease – a guide to diagnosis and therapeutic options
And compare it to the prevalence of fatigue in the paper mentioned in previous posts:
Analysis of the Symptomatology, Disease Course, and Treatment of Postorgasmic Illness Syndrome in a Large Sample
Often seen, rarely recognized: mast cell activation disease – a guide to diagnosis and therapeutic options
And compare it to the prevalence of fatigue in the paper mentioned in previous posts:
Analysis of the Symptomatology, Disease Course, and Treatment of Postorgasmic Illness Syndrome in a Large Sample
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Table 1. Leucocyte subset frequency in PBMC and subsets and activation markers of NK cells:
Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle
Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle
Wow, interesting. You may be aware of this already: low NK cell cytotoxicity is a common finding in MECFS.
Cort has written a few blogs exploring the subject in recent years:
https://www.healthrising.org/blog/category/research/immune-2/natural-killer-cells/
This CDC page also reports on it under 'Immune System Changes':
https://www.cdc.gov/me-cfs/about/possible-causes.html
Cort has written a few blogs exploring the subject in recent years:
https://www.healthrising.org/blog/category/research/immune-2/natural-killer-cells/
This CDC page also reports on it under 'Immune System Changes':
https://www.cdc.gov/me-cfs/about/possible-causes.html
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Thanks for the links J.G. Yes I'm aware of it.
Gut microbiota composition reflects disease severity and dysfunctional immune responses in patients with COVID-19
Gut microbiota composition reflects disease severity and dysfunctional immune responses in patients with COVID-19
I have seen this in POISers as well:
I have had CFS for 6 years and my wife just developed it too
Another example how difficult it is to link the symptoms with POIS despite having extreme symptoms:
"I can't pinpoint a start date, but I've experienced bipolar symptoms and chronic fatigue ever since I was in high school. I have masterbated since I was 13 (and during my teen years definitely experienced porn addiction- which is my theory on what may have created a hormonal imbalance). I did not actually have sex with a partner until 23, and that sex rarely gets me to an O. After abstaining from masterbating I began to realize I felt like an entirely different person. That made me really begin questioning the source of my chronic fatigue."
I have had CFS for 6 years and my wife just developed it too
Another example how difficult it is to link the symptoms with POIS despite having extreme symptoms:
"I can't pinpoint a start date, but I've experienced bipolar symptoms and chronic fatigue ever since I was in high school. I have masterbated since I was 13 (and during my teen years definitely experienced porn addiction- which is my theory on what may have created a hormonal imbalance). I did not actually have sex with a partner until 23, and that sex rarely gets me to an O. After abstaining from masterbating I began to realize I felt like an entirely different person. That made me really begin questioning the source of my chronic fatigue."
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Muon if your wife just developed CFS, that would point to an environmental factor, considering the statistical likelihood being so low otherwise. If you haven't fully investigated CIRS you should do so. My first lab abnormalities in 13 years have came back after ordering Dr Shoemakers tests. MSH ADH hla acth/cortisol tgfb1 c4a c3a vegf mmp9 to name the major ones. All but mmp9 for me was quite abnormal, indicating a chronically unregulated inflammatory state, caused most likely by the water damaged home I lived in for 30 years and possible repeat exposure to toxic algae blooms or an undiagnosed lyme infection. If you have reservations about mold being a factor, trust that I felt the same way for 13 years, only finally to realize that mold illness has absolutely nothing to do with allergies. Its a neurotoxic soup that roughly 25% of us cant eliminate properly. Id like to know your thoughts on this.
@Horizontal_Hero I don't have a wife but I think you refered to the link in the previous post. Yes me and others already thought about environmental factors. My younger brother got POIS as well, grew up in the same house. I've read a little about CIRS aka Mold Illness. Sounds like mold induced mast cell activation to me. I've heard Dr. Theoharides mentioning that it is impossible to know whether mold is triggering symptoms via diagnostic testing. I don't have reservations with regards to mold being a factor though. Do you have POIS yourself?
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It is much much more than mcas, which is just a symptom of it. CIRS more accurately is likely the correct diagnosis of many "wastebasket" illnesses such as cfs, fibro, and chronic lyme. I do indeed have POIS. I find these illnesses to be one in the same, just manifesting differently, probably due to the intricacies of the limbic, autonomic, and hormonal dysfunction. What I speak of is completely revolutionary. If you want a deep dive into the details on CIRS here it is: Dooley-McMahon_Final_Publication_-_3-30-2020.pdf (survivingmold.com)
Otherwise there are some great presentations on youtube from many different MD's. Ive spent the better part of six months reading the literature and hearing peoples recovery stories. This seems to be IT
Otherwise there are some great presentations on youtube from many different MD's. Ive spent the better part of six months reading the literature and hearing peoples recovery stories. This seems to be IT
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Neuroendocrine responses to arousal and orgasm summary
Nanna1 already questioned whether the orgasm induced NK cell response is normal in POIS:
"the orgasm induced a moderate but statistically significant transient elevation of the cytotoxic/suppressor T cell (CD3+CD8+) numbers (Fig. 2). In contrast, the absolute numbers of T cells (CD3+), T helper cells (CD3+CD4+), and B cells (CD3-CD20+) were not affected by sexual stimulation...the levels of LPS-induced proinflammatory cytokines (IL-6, TNF-alpha) remained unaffected by masturbation-induced orgasm...The effects of orgasm on peripheral lymphocyte subsets were restricted to NK cells and had minor or no effects on T or B cell subsets and showed no effects on (IL-6, TNF-alpha) cytokine production, indicating limited and selective effects of orgasm on immune system functions in parallel with its selective and short-lived neuroendocrine effects." -Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)
Nanna1 already questioned whether the orgasm induced NK cell response is normal in POIS:
"the orgasm induced a moderate but statistically significant transient elevation of the cytotoxic/suppressor T cell (CD3+CD8+) numbers (Fig. 2). In contrast, the absolute numbers of T cells (CD3+), T helper cells (CD3+CD4+), and B cells (CD3-CD20+) were not affected by sexual stimulation...the levels of LPS-induced proinflammatory cytokines (IL-6, TNF-alpha) remained unaffected by masturbation-induced orgasm...The effects of orgasm on peripheral lymphocyte subsets were restricted to NK cells and had minor or no effects on T or B cell subsets and showed no effects on (IL-6, TNF-alpha) cytokine production, indicating limited and selective effects of orgasm on immune system functions in parallel with its selective and short-lived neuroendocrine effects." -Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)
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Abstract:
Checking in. I've been on Abilify (aripiprazole) 0.2mg for ~6 weeks. I'm happy to report that it reduces the severity and intensity of my ME symptoms across the board, including very noticeably those of POIS. It's the first drug to ever work for my ME.
As I wrote earlier in this thread, the POIS became more prominent over the years as I declined from moderate to severe (98% bedbound). The inverse now also appears true: an improvement to ME symptoms eases the POIS.
Some form of neurotransmitter imbalance appears to tie the two together, in my case of secondary POIS, at least.
As I wrote earlier in this thread, the POIS became more prominent over the years as I declined from moderate to severe (98% bedbound). The inverse now also appears true: an improvement to ME symptoms eases the POIS.
Some form of neurotransmitter imbalance appears to tie the two together, in my case of secondary POIS, at least.
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