Post Orgasmic Illness Syndrome (P.O.I.S.)
POIS Cause/Treatment Discussions => Auto-Immune Causes and Treatments => Topic started by: Fox on September 19, 2019, 07:35:13 AM
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Hello this is my first post on this forum. Because I am a medical doctor, I thought a lot about the possible causes of this disease. In my own case, POIS-symptoms seems to heavily improve after going gluten-free over many months. Other foods and niacin-containing food seem to have transient positive effects. Also many people on this forum report about dietary causes of POIS. Other symptoms such as headaches, stool problems and skin rashes improved in my case too. I have read about zonulin. A protein that is involved with the opening of tight junctions in the gut and in the brain. The opening of the blood-brain-barrier may cause reactions in the brain that cause brain fog. Maybe zonulin has also a working on the endothelium of the ejeculatory tracts too. When antigens enter the body through the opening junctions in the gut, then maybe a similar process happens through zonulin in the testicles in patients suffering from POIS. Opening of the endothelium junctions could cause autoimmune active agents in the serum to contact with the immune system. In the case of celiac disease also a certain DNA-Profile (HLA-DQ2/DQ8) is necessary to enable the immune-system to present the antigen and cause a pathologic reaction. Without this profile celiac disease can not develop with almost 100% certainty. Maybe a similar DNA-profile is necessary to cause POIS. Some people with POIS also report about gluten-sensitivity. Other causes of leaky gut, such as bacterial overgrowth do exist. Many people report about improvement of the symptoms on a healthy diet in general, that would fit with the idea that a healthy gut helps to reduce POIS symptoms.
What do you guys think?
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Fox, welcome to the forum.
Since I started this forum 12 years ago, I’ve always wanted to meet a POISer who is an M.D.! It’s my lucky day :)
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Good to hear that there are doctors here too!
Welcome!
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I have read about zonulin. A protein that is involved with the opening of tight junctions in the gut and in the brain.
I have checked that one out, it's normal: 30.6 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+3-4+Herpes+Ig%27s%2BIL-8%2BZonulin%2BNKC+function+14-08-2015.pdf)
My brother did the same test, also normal: 31.1 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-3+ECP%2BIL1%2C6%2C8%2BTNF%2BRANTES%2BNTYRO%2BZONULIN.pdf)
Perhaps this could indicate a leaky gut, not sure about this: Candida Albicans LTT (https://www.dropbox.com/s/oovb5fk9hzlpnkz/Muon%204-2%20LTT%20Candida%20Albicans%2014-08-2015.pdf?dl=0)
There might be increased permeability somewhere in the gut due to a mechanism other than disturbed tight junction modulation. The innate immune system might be activated on the spot using neutrophils/macrophages which could send out IL-8 during the process.
Normal gut flora like candida might leak through. The adaptive immune system might kick in due to chronic innate activation leading to specific candida T-lympocyte prolifieration and IFN-g production.
How this could lead to pois I don't know. Maybe some IL signaling might grow receptors on cells in the urinary tract acting on substances in seminal fluid which they did not do before.
I did the Zonulin test in the morning. Not sure if that's different than doing it later on the day after multiple meals.
VEGF is a molecule that is capable of opening up the blood brain barrier. That might be worth checking out.
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Always nice to hear a doctor claiming "leaky gut" as an actual diagnoses criteria.
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Welcome Fox.
Like you I also believe that my ‘version’ of POIS is caused by leaky gut/brain. Testing has shown this too. Determining and treating the root cause is another issue as I have severe food sensitivities (gluten, dairy, lectins, sugar) as well as opportunistic bacteria and parasites (found in stool sample). I suspect this has been ongoing for 30+ years... recovery is one day at a time.
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Welcome Fox.
Like you I also believe that my ‘version’ of POIS is caused by leaky gut/brain. Testing has shown this too. Determining and treating the root cause is another issue as I have severe food sensitivities (gluten, dairy, lectins, sugar) as well as opportunistic bacteria and parasites (found in stool sample). I suspect this has been ongoing for 30+ years... recovery is one day at a time.
sorry if i missed this, how did you testing for food sensitivites.
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Through a blood test that measured the IGG, IGA, and IGE antibodies for various types of food. Since most came back very high it was determined that my small intestine was ‘leaking’ food into the blood stream and causing an immune reaction.
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I have checked that one out, it's normal: 30.6 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+3-4+Herpes+Ig%27s%2BIL-8%2BZonulin%2BNKC+function+14-08-2015.pdf)
My brother did the same test, also normal: 31.1 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-3+ECP%2BIL1%2C6%2C8%2BTNF%2BRANTES%2BNTYRO%2BZONULIN.pdf)
Perhaps this could indicate a leaky gut, not sure about this: Candida Albicans LTT (https://www.dropbox.com/s/oovb5fk9hzlpnkz/Muon%204-2%20LTT%20Candida%20Albicans%2014-08-2015.pdf?dl=0)
Serum zonulin as a marker of intestinal mucosal barrier function: May not be what it seems (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0210728).
Please have a look a this article. It has a graphic with zonulin levels of healthy controls and people with disease. Healthy controls seem to have low levels of zonulin, also measured in ng/ml in serum. Having normal zonulin levels does not rule out the fact that the might play a pathological role in the disease. As POIS is rare, perhaps some genetic door key mechanism is also needed, such as in celiac disease (HLA-DQ2/DQ8). They did seem to use a different assay with different reference values.
I think your value of 30 ng/ml might correlate with 1.0 ng/ml in the other assay, such that it is somewhat higher than the median level of healthy controls.
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I also read about leaky gut in obese men causing damage of DNA in sperm.
Obesity related metabolic endotoxemia is associated with oxidative stress and impaired sperm DNA integrity (https://link.springer.com/article/10.1186/s12610-019-0087-5) ..."metabolic endotoxemia (ME) may activate inflammation within the male reproductive tract, leading to increased reactive oxygen species production, sperm oxidative stress and a decline in DNA integrity."
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Welcome Fox.
Like you I also believe that my ‘version’ of POIS is caused by leaky gut/brain. Testing has shown this too. Determining and treating the root cause is another issue as I have severe food sensitivities (gluten, dairy, lectins, sugar) as well as opportunistic bacteria and parasites (found in stool sample). I suspect this has been ongoing for 30+ years... recovery is one day at a time.
I did interestingly notice a significant improvement of POIS and celiac symptoms after taking Clyndamycin for a tooth treatment. The antibiotic perhaps treated a bacterial foreign pathogen as well. Healthy gut flora seem to have a positive effect for most people here. As not everyone man is having POIS, maybe also genetics play a role.
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Always nice to hear a doctor claiming "leaky gut" as an actual diagnoses criteria.
Many MDs have difficulty with diagnosing systemic diseases such as POIS. When you go to a neurologist and talk about brain fog, muscle weakness and gut problems there is unfortunately a pretty big chance they won't take you seriously. Not every doctors knows all symptoms of celiac disease. I do think that many doctors don't even know about POIS. "Leaky gut" are also pretty hard to diagnose as results are many times negatives for many patients. I like to use plain terminology because we don't still know the exact relationship between gut problems and POIS.
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Fox, I sent along your opening post to our POIS research team.
Regarding our current POIS research study - - from Dr. Nicole Prause, our co-Investigator of our current study 100% funded by POISCenter.com members:
“We (Tierney Lorenz, PhD and I) received a grant to study post-orgasmic illness syndrome (POIS) from the non-profit National Organisation of Rare Disorders.”
More:
https://poiscenter.com/forums/index.php?topic=3006.msg29617#msg29617
https://poiscenter.com/forums/index.php?topic=2462.0
Regards,
Demo
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Welcome Fox.
Like you I also believe that my ‘version’ of POIS is caused by leaky gut/brain. Testing has shown this too. Determining and treating the root cause is another issue as I have severe food sensitivities (gluten, dairy, lectins, sugar) as well as opportunistic bacteria and parasites (found in stool sample). I suspect this has been ongoing for 30+ years... recovery is one day at a time.
Limejuice, I just wanted to take a moment to thank you publicly for your many contributions over the years. And for your very long term loyalty to the cause!
Best,
Demo
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Fox, one forum member states without reservation 100% POIS-free success for 10 years. Drastic procedure: male hysterectomy (orchiectomy and more). Would be interested in any thoughts you have. Maybe we can learn from the procedure...but not do it! :)
https://poiscenter.com/forums/index.php?topic=3004.0
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I have checked that one out, it's normal: 30.6 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+3-4+Herpes+Ig%27s%2BIL-8%2BZonulin%2BNKC+function+14-08-2015.pdf)
My brother did the same test, also normal: 31.1 ng/ml RR: <38 ng/ml (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-3+ECP%2BIL1%2C6%2C8%2BTNF%2BRANTES%2BNTYRO%2BZONULIN.pdf)
Perhaps this could indicate a leaky gut, not sure about this: Candida Albicans LTT (https://www.dropbox.com/s/oovb5fk9hzlpnkz/Muon%204-2%20LTT%20Candida%20Albicans%2014-08-2015.pdf?dl=0)
Serum zonulin as a marker of intestinal mucosal barrier function: May not be what it seems (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0210728).
Please have a look a this article. It has a graphic with zonulin levels of healthy controls and people with disease. Healthy controls seem to have low levels of zonulin, also measured in ng/ml in serum. Having normal zonulin levels does not rule out the fact that the might play a pathological role in the disease. As POIS is rare, perhaps some genetic door key mechanism is also needed, such as in celiac disease (HLA-DQ2/DQ8). They did seem to use a different assay with different reference values.
I think your value of 30 ng/ml might correlate with 1.0 ng/ml in the other assay, such that it is somewhat higher than the median level of healthy controls.
Hmm I see. The assay antibodies might also cross react with other proteins. The relationship between CUSABIO and other assays is quite poor. If you use the linear function which they have drawn then 30 ng/ml is approx. equal to 1.0 ng/ml of the CUSABIO assay meaning it's not only above the median of healthy controls but also significantly above the median of NCWS and coeliac disease. So this doesn't rule out Zonulin, the accuracy of the values I provided are questionable.
Fernab did some genetic testing concerning coeliac disease:
https://poiscenter.com/forums/index.php?topic=2684.msg25430#msg25430
But where do we go from here? Do you got any suggestions?
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Welcome and thanks to learn us what is zonuline. I find it interesting to know zonuline is present is intestine AND testicular barrier.
When I have sugar/junk food in my digestive system, all my intestine become hypersensitive. Diarrehas come 2-3 hours after orgasm. I clearly feel my intestine become "liquid".
Without sugar my Pois last 1 day.
With sugar my Pois last 3 days with hot flash 30 minutes after meals.
My experience with gluten :
- I have not celliac disease
- clearly gluten gave me important gaz and abdominal pain. (for example, I can't wear trousers with belt because I have important gaz accumulation)
- I don't have the feeling gluten free diet improve my Pois. But I didn't follow it very seriously.
Anyway, Taurine greatly improves my Pois, so metabolic/nervous system causes is still my favorite...
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Thank you Demo! This community has contributed to my motivation and information about POIS over the years too. Together we are a synergistic team :)
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:) :) :)
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Fox, one forum member states without reservation 100% POIS-free success for 10 years. Drastic procedure: male hysterectomy (orchiectomy and more). Would be interested in any thoughts you have. Maybe we can learn from the procedure...but not do it! :)
https://poiscenter.com/forums/index.php?topic=3004.0
It seems that many of us are able to somehow reduce symptoms through dietary or other measures. Interestingly, men report about less symptoms of POIS after penetration sex than through masturbation. I wonder if this relates to the fact that man in a relationship eat probably more healthy food. Fresh vegetables bring also healthy micro-organisms to balance the gut flora. There is a lote of ongoing research about gut-brain-axis pathological mechanisms. For example there is growing evidence that depression, bipolar disorder and schizophrenia are at least negatively influenced by gut micro-organisms.
Probably different forms and levels of severity of POIS exist. It can be that this forum member had really severe disease. I have read that sterilisation alone does not help. The semen seems to be needed to cause the pathology. I could not find data about blood pressure changes and prolactin spikes in people with POIS after orgasm. Here is some reference data (https://www.researchgate.net/publication/225384248_Endocrine_response_to_masturbation-induced_orgasm_in_healthy_men_following_a_3-week_sexual_abstinence) I would generally advice against surgery, because we still don't know what POIS exactly is, there may be variants which may not respond to such surgical interventions.
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My experience with gluten :
- I have not celliac disease
- clearly gluten gave me important gaz and abdominal pain. (for example, I can't wear trousers with belt because I have important gaz accumulation)
- I don't have the feeling gluten free diet improve my Pois. But I didn't follow it very seriously.
Anyway, Taurine greatly improves my Pois, so metabolic/nervous system causes is still my favorite...
I like to use celiac disease as a reference model, because it has been well researched over the years. There are unfortunately many people with gluten-sensitivity which complete normal serum values. These people may also present with many extra-intestinal symptoms, partly mimicking POIS. Such as brain fog, concentration difficulty and fatigue. Some of the symptoms of POIS are not typical for allergy. People with (NCGS) non celiac gluten-sensitivity should respond relatively fast to a gluten-free diet, within two weeks or so. I believe when there is a lot of bacterial overgrowth, a gluten-free diet may take somewhat longer. Bloathing can of course have a lot of other causes?.
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There is a lot of ongoing research about gut-brain-axis pathological mechanisms.
This forum once created a $35,000 grant for a world renowned orgasm research team who believed in this same GBA pathological mechanism you describe and started to study vagus nerve dystonia as a possible POIS culprit. Unfortunately, the study could not be completed due to a number of unrelated events.
Along those lines, a number of forum members today continue to look at possible POIS relief via tVNS:
https://poiscenter.com/forums/index.php?topic=2969.msg28466#msg28466
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It can be that this forum member [Animus] had really severe disease.
I think you’re right. His video story below might confirm (I haven’t seen it in a long time). Many of us here I believe have had “really severe” POIS, including myself. The lifelong severity and effect on my functioning (so poorly) is what motivated me to get so involved in the cause.
The Learning Channel TV program video link on Animus’ POIS cure:
https://m.youtube.com/watch?v=6sdaR18vw1s
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Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.
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Fox, do you got other medical conditions aside from POIS? Allergies?
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Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.
b_jim, in your 12-year old POISer tracking & analysis, hasn’t fenugreek emerged as working somewhat for several POISers?
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Fox, do you got other medical conditions aside from POIS? Allergies?
I actually do have very low cholesterol: LDL 27 mg/dl, HDL 40 mg, Total cholesterol 98 mg/dl. Triglycerides 35 mg/dl. ApoB was 24 mg/dl. Which, with no doubt, causes (at least subclinical) lack of fat-soluable vitamins, such as vitamin E. These values are too low to be explained be celiac disease alone. Probably it relates to a benign condition called FHBL. People with celiac disease experience a slight increase in cholesterol when going gluten-free, which did not happen in my case.
I have also have some rare symptom which is called cold paresis (your doctor hasn't heard of it before probably :D). That means, that muscles that muscles get weaker when exposed to prolonged cold. Putting my hands under ice cold water (1 min) leads to decrease in muscle strength in the local hand muscles, measurable by spreading the fingers against force. Eating ice cream in summer can alter speech a bit over 10 minutes. These symtoms may be explained through nerve damage or malfunctioning due to vitamin deficiency, gluten-damage, or due to a light variant of a genetic condition called paramyotonia congenita. There are also some other rare diseases which cause cold paresis such as MMN (multi-focal motor neuropathy), Hirayama disease which I believe I don't have.
What is interesting about paramyotonia congenita is that it is a channelopathy. Some patients have a condition called sexual headache, which leads to headache directly after orgasm. The pathology of migraine is not entirely understood but it might relate to channel malfunctioning and vasodilatation.
A channelopathy might also be a plausible disease model for POIS, in which the sudden burst of hormones (prolactin) and blood pressure by orgasm may cause some impaired channel to be overloaded. Someone on the forum had genes for congenital myasthenia (=myasthenia caused by channel mutations) which is interesting, because such people may suffer from dysautonomia.
Interestingly I can induce POIS-like symptoms by drinking more than 0,5 liter of cola, which can't be explained by reactive hypoglycemia.
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Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.
b_jim, in your 12-year old POISer tracking & analysis, hasn’t fenugreek emerged as working somewhat for several POISers?
Fenugreek comes with micro-organisms on it. It could be that he improved his gut flora by eating herbs. Vitamin deficiency would result from lipid malabsorption. Are there people among you guys who have proven vitamin deficiency/cholesterol deficiency?
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Dr. Why did you jump into the conclusion that it's some sort of endothelial barrier dysfunction rather than a neurological disorder? Do you not have brain symptoms?
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I would like to add the discussion the possibility of a group of different genetic mutations causing POIS, explaining the different phenotypes and severity degrees. As mentioned in other threads some people (as in my case) notice slight myasthenia-like symptoms. As myasthenia gravis itself seems not to be linked with POIS, other forum members considered CMS (congenital myasthenia gravis) as a possible cause of POIS. CMS partly overlaps with other diseases, like periodic paralysis and (para)myotonia. In each disease case the symptoms depend mostly on the exact (channel) mutation. Symptoms can vary between hardly noticeable and severe.
Interestingly in periodic paralysis there are also triggers, like eating much sugar which cause symptoms. Periodic paralysis also can cause brain fog. The symptoms in these kind of diseases can also last over a few days.
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Fox , this is intresting observation from you.
I hawe MG symptomes, i did tested
Ach antibodies-negative.
Then i learned that MG could be nonserologic(there are several new diagnostic posibilitys)
I to has this cold paresis symptomes , but on heat i go in pois state condition, nervos system acting like it wil be comlitly stopped (feels like im diying :) , "like fish on dry" :) .
From my observation here, some poisers are immunocompromised.
When i pulled Virus theory, and
sugested antivirals, some poisers responded wery well (it was life changer for them)
They are no active here eny more.
So, something suppresing our imunity ...
As you can notice, gut and diet connection, play crucial role in some poisers...
Then i noticed from our medic tests results , that a lot of us has low
neutrophils count(like neutrophenia).
Nana1 notice that this is rare.
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Dr. Why did you jump into the conclusion that it's some sort of endothelial barrier dysfunction rather than a neurological disorder? Do you not have brain symptoms?
Because many people report improvement after diet modifications a gut-brain-axis related cause may be plausible. We can't conclude (yet) that it is neurological disorder, because we can not demonstrate primary focal brain, nerve of muscle pathology. In the case of for example gluten-ataxia we can demonstrate shrinkage of the cerebellum, although the primary disease is celiac disease. For example low blood sugar causes a foggy brain, but the cause of the low blood sugar does not lie in the brain. There a still a lot of research questions for POIS. I did have the brain fog symptoms and unclear speech in the past. I also did have episodes of muscles weakness, which were provokeable through cold or prolonged exercise.
There is also the question to which doctor you go to. A neurologist is very competent at diagnosing different neurological diseases through exams and examining results of scans, nerve measurements etc. In the case of POIS with diffuse symptoms I would rather first go to a doctor for internal medicine or a urologist. When you only have headache, muscle weakness or speech problems after sex, then I would first go to a neurologist. It differs however in certain countries to which doctor you go to in which case..
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This forum once created a $35,000 grant for a world renowned orgasm research team who believed in this same GBA pathological mechanism you describe and started to study vagus nerve dystonia as a possible POIS culprit. Unfortunately, the study could not be completed due to a number of unrelated events.
Along those lines, a number of forum members today continue to look at possible POIS relief via tVNS:
https://poiscenter.com/forums/index.php?topic=2969.msg28466#msg28466
I found some interesting article about vagal nerve stimulation in gut-brain-axis related disorders: Vagus Nerve as Modulator of the Brain?Gut Axis in Psychiatric and Inflammatory Disorders (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5859128/). It is plausible to think that a unhealthy gut causes a dysautonomia through impaired vagal nerve back-communication to the brain. It is funny that we always talk about the vagal nerve, although we have actually two of them :) Some people on this forum report about improvement after intake of acetylcholine-agonists, which also activates parasympathic function. The question then raises whether in POIS the vagal is not enough stimulated enough or the signal does not reach the vagal nerve through neurotransmitter-channel impairment. When a dysfunctional vagal nerve would be involved in POIS, then the sympathetic tone would be dominating during sexual arousal, explaining also the early ejaculation, which is frequently reported in POIS.
When a weak acetylcholine-channel (genetic or auto-immune/food allergy) would be the cause of vagal nerve understimulation in POIS. Then the already weak channels may somehow be depleted during the phase in which the body tries to return in normal state under influence of prolactin after sympathetic nerve activation.
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Hi Fox, and welcome to the forum !
I agree that many members had improvement when turning to a more healthy diet. Better nutrition is part of my own overall relief method. No more industrial food, no more MSG, no more aspartame, no more artificial flavor or color, no more refined sugar. And, for 4 years now, my green smoothies of organic veggies and fruits are an essential part of my diet. I have more energy now at 54 than I had at 35 :) I think a healthier diet would help anybody, not just POIS sufferers, so it is a logical first step for any POIS sufferer.
Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ? Flooding the guts with good bacteria really helps getting rid of the methane-producing ones. Clindamycine can help in theory to get rid of anaerobic bacteria, but after antibiotherapy is finished, the bacteria left will occupy the free space again, with time.
Channelopathies have been briefly discussed here. I do not exclude that it may be part of what causes my POIS, because taking potassium really helps with my fatigue, both for POIS and after physical exercise. As you mention in a previous post, it may be possible that a different set of unfavorable SNPs can be present in POIS sufferers, and depending on the specific set of SNPs one has, it determines the severity and exact symptoms list one shows when in POIS. This also would account for the fact that it seems to be more than just one type of POIS.
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That means, that muscles that muscles get weaker when exposed to prolonged cold.
I've got exactly the opposite. The closest disease it resembles is Lambert Eaton myasthenic syndrome.
https://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome
''The weakness from LEMS typically involves the muscles of the proximal arms and legs (the muscles closer to the trunk). In contrast to myasthenia gravis, the weakness affects the legs more than the arms.''
''High temperatures can worsen the symptoms.''
Also my left half of my face can hang a bit when I'm tired or during POIS.
I had some strange events in the past like respiratory muscles that became weak spontanously for an hour, very hard to breath. During a summer I was close to some sort of gagg attack which I could prevent by laying down. Also had swallowing problems as a kid. Had more events like extreme decreasesd GI motility and digestion problems for short periods during hot days. Dysautonomia is present as well. Prolonged static postures is worse than moving around.
What is interesting about paramyotonia congenita is that it is a channelopathy.
Stiff muscles is something that is present in my familiy. I get it when resting, by POIS or heat. More so by resting after symptom triggering by POIS, heat or prolonged static postures/too much walking around(shopping, doing dishes).
A channelopathy might also be a plausible disease model for POIS, in which the sudden burst of hormones (prolactin) and blood pressure by orgasm may cause some impaired channel to be overloaded. Someone on the forum had genes for congenital myasthenia (=myasthenia caused by channel mutations) which is interesting, because such people may suffer from dysautonomia.
My cytokines become lower for a brief period after ejaculation. Cytokine release depends on calcium influx. It might be possible there is a weakened calcium influx during POIS. Other cells might be responding differently due to this like mast cells, T-cells etc.
The night before I got Bell's Palsy I drank alcohol and ate peanuts. I was also tired. A few days before I had visited a dentist as well. Not sure what factor led to this situation.
Oh and I had a low vitamin D level and a low total cholesterol level as well. I haven't check up on cholesterol again. My mother got high cholesterol values while she is skinny. I think I have typed too much and will stop here.
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https://www.sciencedirect.com/science/article/pii/S1568997215000245
Glucose, salt, emulsifiers, organic solvents, gluten, mTG, and nanoparticles are extensively and increasingly used by these industries to improve the qualities of the food (as claimed by manufacturers and some consumers). However, all these food additives increase intestinal permeability by bringing about TJ paracellular transfer.
But the question is always just me, why only us ???
The pois would then be an epidemic!
Is gene expression in pois became
switched on
and stayed in switched on position???
Genetics plays a role in poisers i think.
When a rabbit farts in the forest,
i sneeze 10-15 times in a row,
the same like my mother.
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when a rabbit farts in the forest,
i sneeze 10-15 times in a row,
the same like my modher.
When Rabbit farts are being thrown into the mix you know you are dealing with Dr. POIS (LOL).
Btw Mothers with atopy have a higher chance of getting kids who are more prone to allergies/sensitivities.
Something similar with T-regs: Impaired function of regulatory T cells in cord blood of children of allergic mothers (https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2249.2012.04630.x)
The innocent looking allergies/sensitivities some poisers have might be an indication we are dealing with dysfunctional Tregs or abnormal numbers. Animus has allergies, also some POIS papers state patients with atopy if I remember correctly.
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Hi Fox, and welcome to the forum !
..
Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ?..
...because taking potassium really helps with my fatigue, both for POIS and after physical...
No I did not try probiotics yet. Currently my GI- and POIS-symptoms are also very low. In my case gluten-free did the most change, perhaps clyndamycin helped a bit too. For a few years I tried gluten-free also without the same much difference perhaps due to bacterial overgrowth.
I eat 2-3 bananas each day as a source of potassium :)
Interestingly talking about potassium, I can induce some muscle weakness by eating too much liqorice (which is in these black candies). Liqorice has the potential to lower potassium. So potassium balance may be important also.
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Bad :-\ I get hemoragic diarrheas and yellowed stools. Bloodtest and stooltest in 7 days. Hope my liver is ok.
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When Rabbit farts are being thrown into the mix you know you are dealing with Dr. POIS (LOL).
;D
She is allergic even to the bark of the tree as soon as the juice begins to
the wood is flowing, and the bark is bursting.
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Bad :-\ I get hemoragic diarrheas and yellowed stools. Bloodtest and stooltest in 7 days. Hope my liver is ok.
Yellowed stools can be caused by taurine. It has an effect on bile acids.
It can also be caused by Gilbert's syndrome (which is benign).
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She is allergic even to the bark of the tree as soon as the juice begins to
the wood is flowing, and the bark is bursting.
Does she have 'allergic shiners'?: https://youtu.be/HNNPsZlDTEQ?t=609
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Fox, once again, I’m sure many people here agree with me: it’s wonderful to have your participation!
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I've got exactly the opposite. The closest disease it resembles is Lambert Eaton myasthenic syndrome (LEMS).
In the case of celiac disease there are some case reports of people presenting with myasthenia-like symptoms who respond to gluten-free diet, suggesting an auto-immune cause other than myasthenia gravis (MG) itself. MG is post-synaptic and LEMS ist pre-synaptic. Having typical LEMS would mean that it would be progressive in the course and could mean that you are not able to walk anymore. The muscle symptoms in POIS however seems to be more mild. The symptoms in both our cases don't fit with myasthenia gravis either (usually present with face and speech symptoms first, changing hanging eyelids, more variation in the day, faster symptoms after exercise).
The latest paper of Dr. Waldinger also suggest a auto-immune cause of the disease. The question is why a auto-immune reaction in the neuromuscular junction would happen after ejaculation. As you report, the symptoms seems to be in someway also present without ejaculation. Meaning the auto-immune disease is perhaps mild but always active in the neuromuscular junction, perhaps overreacting through auto-immune triggering caused by semen after orgasm. A calcium channel might well be involved because the symptoms are somehow more LEMS than MG-like. Interestingly, genetic LEMS seems to have the same genetic risk factor constellation as celiac disease. Zinc present in semen is a natural competitor of calcium. There might influence through too much cold or too much heat. LEMS-like symptoms may present with a small improvement after muscle contraction and after that weakness follows. I too notice difficulty with starting to speak after a rest period, or a short-lasting heavy feeling in the legs after long sitting.
Also had swallowing problems as a kid
me too. speaks more for a genetic cause. It is in this case also interesting that Dr. Waldinger had many POIS-patients in the Netherlands. Genetic conditions present themselves more often in local regions.
Prolonged static postures is worse than moving around.
I also can't tolerate long standing, with increased sweating and so on, speaking for a overactive sympathetic system during POIS.
Stiff muscles is something that is present in my familiy. I get it when resting, by POIS or heat. More so by resting after symptom triggering by POIS, heat or prolonged static postures/too much walking around(shopping, doing dishes).
That certainly speaks for a mild genetic condition. I notice it too after resting. It is like having to push the words out when speaking. In contrast the speech gets a bit nasal and blurry after 5-10 minutes of prolonged speaking.
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when a rabbit farts in the forest,
i sneeze 10-15 times in a row,
the same like my modher.
When Rabbit farts are being thrown into the mix you know you are dealing with Dr. POIS (LOL).
Muon, not to worry, this only applies to Croatian rabbits. With POIS. (j/k)
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Fox, once again, I am sure many people here agree with me: it is wonderful to have your participation!
Thanks! I hope we can help each other out for a better understanding of this disease.
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I've got exactly the opposite. The closest disease it resembles is Lambert Eaton myasthenic syndrome (LEMS).
In the case of celiac disease there are some case reports of people presenting with myasthenia-like symptoms who respond to gluten-free diet, suggesting an auto-immune cause other than myasthenia gravis (MG) itself. MG is post-synaptic and LEMS ist pre-synaptic. Having typical LEMS would mean that it would be progressive in the course and could mean that you are not able to walk anymore. The muscle symptoms in POIS however seems to be more mild. The symptoms in both our cases don't fit with myasthenia gravis either (usually present with face and speech symptoms first, changing hanging eyelids, more variation in the day, faster symptoms after exercise).
I don't think I have LEMS, I was talking about a few specific symptoms that have overlap. The gluten could be a trigger for hyperresponsive mast cells.
The latest paper of Dr. Waldinger also suggest a auto-immune cause of the disease. The question is why a auto-immune reaction in the neuromuscular junction would happen after ejaculation.
Mast cells are close to nerve endings and released mediators could damage it.
Zinc present in semen is a natural competitor of calcium. There might influence through too much cold or too much heat.
There is a class of ion channels called temperature gated ion channels which might be involved, I haven't read up on that. Or again mast cells getting triggered by temperature (changes).
It is in this case also interesting that Dr. Waldinger had many POIS-patients in the Netherlands. Genetic conditions present themselves more often in local regions.
This has been overlooked yes. Could also be a mutation making mast cells hyperresponsive in a different way for other local regions reacting on different molecules in semen and releasing different mediators leading to a different outcome in skin pricks/symptoms. My brother has POIS which could mean a genetic component is involved.
I notice it too after resting. It is like having to push the words out when speaking. In contrast the speech gets a bit nasal and blurry after 5-10 minutes of prolonged speaking.
I don't notice it in relation to speaking. Prolonged speaking however gets me tired quickly which leads to a downward spiral of cognetive symptoms.
I got a huge pallette of symptoms with complex dynamics which may come and go. Zooming in on a few symptoms which they are doing in healtcare doesn't work in my case. There is one condition that comes close to the big picture and in my mind that's https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome
More like a mild leaking variant where symptoms are trending over time with synergy of triggers.
I was hunting down some auto-antibodies in the past for POTS but the two that were on top of my list weren't available 4 years ago. Those were calcium channel and adrenergic receptor related. I'm seeing that they are available now but since my POTS has been improved over the years I'm not sure it's worth it to get them tested.
https://www.mayocliniclabs.com/it-mmfiles/Autoimmune_Dysautonomia_Evaluation_Testing_Algorithm.pdf
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Muon, thanks for the extensive responses! I think that the fact that your brother suffers from POIS as well, might be an important fact. Even when POIS happens 1 in 100, then the chance would be 1 in 10.000 that both of you were involved when it is totally not genetic. You mentioned some other subject to before. The role of micro-organisms such as candida ofcourse might play role as well. Semen contents can control the pressure in the female uterus. Element such as zinc or acetylcholine in semen might act as a modifier of present candida on the penile surface, changing them from yeast in hyphe form. 50% of people with POIS are circumcised, so that probably does not play a big role. There exsist however a auto-immune disease that heals after circumcision (lichen sclerosis), which is rather interstingly but poorly understood.
Perhaps the human immune respons acts strong after such a change of micro-organisms. Perhaps a defect genetic mucosal/endothelial function then plays a role as well. Humans use acetylchline mainly for neuro-transmission, a lot of micro-organisms use acetylcholine for other functions. Perhaps the human autonomic changes during orgasm may provoke somehow changes in gut pathogens that provoke a spike in immune responses. Then ofcourse we get back to the defect tight junctions and the biochemical immune responses you described.
Perhaps the experienced weakness might not relate to any form of myasthenia at al, because such weakness is also seen in other auto-immune diseases, which as you stated might relate to the influence of the immune system on the (neuro)muscular function.
What is really interesting is, that niacinamide actually seems to kill candida. Effect of Nicotinamide Against Candida albicans (https://www.frontiersin.org/articles/10.3389/fmicb.2019.00595/full)
Unfortunately, I don't have any time left to write further...
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Fox, one forum member states without reservation 100% POIS-free success for 10 years. Drastic procedure: male hysterectomy (orchiectomy and more). Would be interested in any thoughts you have. Maybe we can learn from the procedure...but not do it! :)
https://poiscenter.com/forums/index.php?topic=3004.0
Bolded above, just to make sure people know where I stand!
But I’m very happy for member Animus!!
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Hello forum.
this is Animus! Demo copied me on the conversation going on. And I just wanted to add, also , that I see a possible benefit to Understand the causes of POIS, without actually going through the very Invasive Surgeries which I had. I am happy to report success in defeating POIS. And I would like to share my story with scientists/ community.
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Animus, thanks for posting!
And I’m glad you don’t seem disappointed that I might discourage some others from following your path.
I think I agree with Quantum and others who say there’s no guarantee that all forms of POIS would respond as successfully as yours did!
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Hello this is my first post on this forum. Because I am a medical doctor, I thought a lot about the possible causes of this disease. In my own case, POIS-symptoms seems to heavily improve after going gluten-free over many months. Other foods and niacin-containing food seem to have transient positive effects. Also many people on this forum report about dietary causes of POIS. Other symptoms such as headaches, stool problems and skin rashes improved in my case too. I have read about zonulin. A protein that is involved with the opening of tight junctions in the gut and in the brain. The opening of the blood-brain-barrier may cause reactions in the brain that cause brain fog. Maybe zonulin has also a working on the endothelium of the ejeculatory tracts too. When antigens enter the body through the opening junctions in the gut, then maybe a similar process happens through zonulin in the testicles in patients suffering from POIS. Opening of the endothelium junctions could cause autoimmune active agents in the serum to contact with the immune system. In the case of celiac disease also a certain DNA-Profile (HLA-DQ2/DQ8) is necessary to enable the immune-system to present the antigen and cause a pathologic reaction. Without this profile celiac disease can not develop with almost 100% certainty. Maybe a similar DNA-profile is necessary to cause POIS. Some people with POIS also report about gluten-sensitivity. Other causes of leaky gut, such as bacterial overgrowth do exist. Many people report about improvement of the symptoms on a healthy diet in general, that would fit with the idea that a healthy gut helps to reduce POIS symptoms.
What do you guys think?
My thoughts on the Leaky Gut Theory. Leaky Brain theory as to the <Cause> of POIS is that it is highly improbable. I really do not think Celiac Disease has any direct Causal Relationship to POIS.
However, I do note, and would like to be clear, that POIS does cause an Intensification of Existing Illnesses. So if you do have Celiac Disease. POIS could worsen it. I am really glad to hear that your symptoms have improved by changing your diet.
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I am happy to report success in defeating POIS. And I would like to share my story with scientists/ community.
One of the most encouraging things I’ve read in my 12 years here!
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You mentioned some other subject to before. The role of micro-organisms such as candida ofcourse might play role as well. Semen contents can control the pressure in the female uterus. Element such as zinc or acetylcholine in semen might act as a modifier of present candida on the penile surface, changing them from yeast in hyphe form.
I had some yeast/fungi spots on my skin over the years. These were discolorations. If you compare the growth of a spot over a period of 24 hours you won't detect any increase in radius. These things were developing very slowly over the course of multiple days to weeks and were quite innocent.
The oral candida outbreak was completely different in terms of speed of growth and intensity. This one just developed from nothing to white layers on oral surfaces and when the surfaces were coated it started to form wires all within 1 day. It also hurts when I moved my mouth/tongue, there wasn't mucus left, all extremely dry. I used an anti-fungal gel, Daktarin, which helped but when I swallowed the stuff I became weak and literally dropped to the ground. It felt like my immune resistance was swept away. Perhaps some kind of hypersensitivity reaction, I don't know? This effect was new to my GP at that time compared to other patients who were using it. So I used the stuff the flush my mouth.
My feet are sensitive to fungi when in POIS. But this is slowly developing and not of much concern. I'm using vicks vaporub for that if I see some redness developing between toes or toenails getting affected.
I think it might have to do with temporary IL-17 decrease which fungi might take advantage of. Perhaps via Catecholamine/tryptophan/kyn pathways affecting the Treg/Th17 axis.
My aunt had a vaginal yeast infection when she was 16. She also got food sensitivities.
My mother gets a burning sensation by intravaginal contact with semen. Just like myself I can get a burning sensation from my own semen.
There might be some answers in here:
Manifestations of immune tolerance in the human female reproductive tract (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3570961/)
50% of people with POIS are circumcised...
Source?
Perhaps a defect genetic mucosal/endothelial function then plays a role as well.
Maybe, see paper above for more potential mucosal reproductive tract related immune causes.
Oh yes before I forget. All the women with health problems in my family felt better during pregnancy.
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My thoughts on the Leaky Gut Theory. Leaky Brain theory as to the <Cause> of POIS is that it is highly improbable. I really do not think Celiac Disease has any direct Causal Relationship to POIS.
However, I do note, and would like to be clear, that POIS does cause an Intensification of Existing Illnesses. So if you do have Celiac Disease. POIS could worsen it. I am really glad to hear that your symptoms have improved by changing your diet.
Hello Animus,
I think your case is very relevant to the understanding of POIS as a disease. It proves that it is not a pure psychological disease and that by severely reducing semen/Sperma POIS may be cured. As we still don't know in what exact way your surgery cured POIS and don't if the same effect can be achieved we need to be very cautious from a medical standpoint. One big problem with the procedure is that it is a one-way trip with risks of complication, such as not be able anymore to get erections and orgasms. I think it is never bad to advice general health improvement by healthy diet, because even when the gut has nothing to do with it, it may as you also state have additional negative effect on POIS. I too don't believe that celiac disease related strong to POIS. At least on person on the forum here had negative genetic for celiac.
We speculate about different theory models for a better understanding of POIS. Because the scientific research so far about POIS is a bit lacking, there may be a benefit of sharing different ideas and causes. As a MD I have a special interest in rare diseases. I recently detected a potential deadly disease in a patient who had been seeing doctors for more than a year. As stated by someone before, many MDs are a bit inclined to focus on one certain aspect of a problem (perhaps the thing related to their specialty). They can also be a bit rigid about taking extra time for a patient in complex cases, when they are used to plan only a few minutes for a patient. In some countries the medical training is extremely good and then it may be less a problem. Even "easy" diseases as celiac disease being diagnosed with long delay. It takes 7 years on average to diagnose myasthenia.
I believe that sharing results and ideas may perhaps even cause a major breakthrough in the understanding of POIS.
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I had some yeast/fungi spots on my skin over the years. ...This one just developed from nothing to white layers on oral surfaces and when the surfaces were coated it started to form wires all within 1 day. ?. My feet are sensitive to fungi when in POIS. But this is slowly developing and not of much concern. I'm using vicks vaporub for that if I see some redness developing between toes or toenails getting affected? I think it might have to do with temporary IL-17 decrease which fungi might take advantage of. Perhaps via Catecholamine/tryptophan/kyn pathways affecting the Treg/Th17 axis? My aunt had a vaginal yeast infection when she was 16. She also got food sensitivities?.My mother gets a burning sensation by intravaginal contact with semen. Just like myself I can get a burning sensation from my own semen..Oh yes before I forget. All the women with health problems in my family felt better during pregnancy.
Muon, thanks again for sharing this detailed information. This makes me think about copper metabolism in the body. My ceruloplasmin has been relatively low (6.9 percentile) with normal total copper. Did they measure that in your family? It means for example in my case that between 30-50% more free unbound copper is in the body. Copper normally can act as toxic agent for micro-organisms. Candida however has good defense mechanisms and may increase its virulence when more free unbound copper is available. During pregnancy ceruloplasmin is increased and that leads to perhaps less free unbound copper, perhaps (very speculative again :) ) reduce experienced symptoms. Copper overload may also lead to a increased adrenergic autonomic reaction. People with more severe copper problems, such as in Wilson disease, may have autonomic problems as well, mainly impaired parasympathetic function. Adrenalin increase such as happens in orgasm may lead to increased serum levels of copper. When people have a deficiency ceruloplasmin, then more free unbound copper may be released causing a negativ effect on the immune system, brain fog etc... The response to daktarin you described is interesting, I have never seen that before. I have to think about that. I don't know very much about IL17 either, so I have to read a bit about that.
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Low ceruloplasmin is comon patern in poisers.
So "we are copper toxic", but, what can we do about that?
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Fox, some of us - including me - have hypothesized that physical trauma may contribute to POIS. For some people. In my particular case, a surgical correction to an undescended testicle at birth. Any thoughts would be more than welcome.
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My thoughts on the Leaky Gut Theory. Leaky Brain theory as to the <Cause> of POIS is that it is highly improbable. I really do not think Celiac Disease has any direct Causal Relationship to POIS.
However, I do note, and would like to be clear, that POIS does cause an Intensification of Existing Illnesses. So if you do have Celiac Disease. POIS could worsen it. I am really glad to hear that your symptoms have improved by changing your diet.
Hello Animus,
I think your case is very relevant to the understanding of POIS as a disease. It proves that it is not a pure psychological disease and that by severely reducing semen/Sperma POIS may be cured. As we still don't know in what exact way your surgery cured POIS and don't if the same effect can be achieved we need to be very cautious from a medical standpoint. One big problem with the procedure is that it is a one-way trip with risks of complication, such as not be able anymore to get erections and orgasms. I think it is never bad to advice general health improvement by healthy diet, because even when the gut has nothing to do with it, it may as you also state have additional negative effect on POIS. I too don't believe that celiac disease related strong to POIS. At least on person on the forum here had negative genetic for celiac.
We speculate about different theory models for a better understanding of POIS. Because the scientific research so far about POIS is a bit lacking, there may be a benefit of sharing different ideas and causes. As a MD I have a special interest in rare diseases. I recently detected a potential deadly disease in a patient who had been seeing doctors for more than a year. As stated by someone before, many MDs are a bit inclined to focus on one certain aspect of a problem (perhaps the thing related to their specialty). They can also be a bit rigid about taking extra time for a patient in complex cases, when they are used to plan only a few minutes for a patient. In some countries the medical training is extremely good and then it may be less a problem. Even "easy" diseases as celiac disease being diagnosed with long delay. It takes 7 years on average to diagnose myasthenia.
I believe that sharing results and ideas may perhaps even cause a major breakthrough in the understanding of POIS.
Hello Fox,
thank you for your response. I agree that a good diet is helpful no matter what the ailment. After all, they say food is the best medecine of all. And it certainly does not hurt to share ones successes when dealing with POIS.
And yes, I think your characterization of my solution is correct, as "severely reducing (the production of) Semen, Sperma" to counter POIS.
On the topic of Diet, which is very interesting... I have an observation to add. I don't know if it's relevant to others as well... But I found, and still find, that eating lots of meat- Protein- will have the effect of stimulating my sexual functions. So when I had POIS, and I ate a lot of meat for dinner- I would feel an unusually strong urge to have sex. By a lot of meat- I mean, more than say 1/2 a pound, approaching 1 pound.
Just speculating, but I wonder if becoming vegetarian would have a beneficial effect on POIS? and if there are any vegetarian members here who may have noticed something. Any thoughts?
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Fox, some of us - including me - have hypothesized that physical trauma may contribute to POIS. For some people. In my particular case, a surgical correction to an undescended testicle at birth. Any thoughts would be more than welcome.
Demo, Very much agree that POIS is a reaction to Physical Trauma. Very interesting to hear that you had testicular surgery prior to getting POIS.
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Fox, some of us - including me - have hypothesized that physical trauma may contribute to POIS. For some people. In my particular case, a surgical correction to an undescended testicle at birth. Any thoughts would be more than welcome.
Demo, Very much agree that POIS is a reaction to Physical Trauma. Very interesting to hear that you had testicular surgery prior to getting POIS.
Thanks, Animus!
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On the topic of Diet, which is very interesting... I have an observation to add. I don't know if it's relevant to others as well... But I found, and still find, that eating lots of meat- Protein- will have the effect of stimulating my sexual functions. So when I had POIS, and I ate a lot of meat for dinner- I would feel an unusually strong urge to have sex. By a lot of meat- I mean, more than say 1/2 a pound, approaching 1 pound.
Just speculating, but I wonder if becoming vegetarian would have a beneficial effect on POIS? and if there are any vegetarian members here who may have noticed something. Any thoughts?
Animus, my experience has been that a vegetarian diet does absolutely nothing for my pois. Even if I eliminate anything that makes me horny, pois symptoms will always occur.
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Did they measure that in your family?
No and I don't recognize myself in the overal symptomatic picture of ceruloplasmin/copper related diseases.
The response to daktarin you described is interesting, I have never seen that before. I have to think about that.
My GP called an institute that track these kind of side effect reports and I was the only one who reported this kind of behaviour.
I don't know very much about IL17 either, so I have to read a bit about that.
My brother got the combination of low tryptophan, low serotonin and low IL-17. C. Albicans is able to downregulate IL-17 by affecting tryptophan metabolism:
Candida albicans Dampens Host Defense by Downregulating IL-17 Production (https://www.jimmunol.org/content/185/4/2450.short)
Since my throat was not affected but the mouth was:
Th17 cells and IL-17 receptor signaling are essential for mucosal host defense against oral candidiasis (http://jem.rupress.org/content/206/2/299.short)
So what might have happened that day is that IL-17 dropped down. C. Albicans might have capitalized on that. Candida itself might have suppressed IL-17 on top of that synergizing. This downregulation might have affected the Treg/Th17 axis. Function or numbers of Tregs could have been altered, thus affecting immune tolerance and thus led to a reaction to Daktarin. I respond to many things so this is no surprise. I wonder if the oral ,throat mucosal responses to food for instance share the same cause as POIS.
Could also be possible that the die off toxins in the swallowed Daktarin signaled the mucosal surfaces further down the line. The stuff was also very sweet. I had problems with sugar as well at that time.
If this pathway plays a role then the cause may also lie further upstream as in dopamin metabolism/release. Or unstable mast cells caused a reaction to Daktarin gel.
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On the topic of Diet, which is very interesting... I have an observation to add. I don't know if it's relevant to others as well... But I found, and still find, that eating lots of meat- Protein- will have the effect of stimulating my sexual functions. So when I had POIS, and I ate a lot of meat for dinner- I would feel an unusually strong urge to have sex. By a lot of meat- I mean, more than say 1/2 a pound, approaching 1 pound.
Just speculating, but I wonder if becoming vegetarian would have a beneficial effect on POIS? and if there are any vegetarian members here who may have noticed something. Any thoughts?
Animus, my experience has been that a vegetarian diet does absolutely nothing for my pois. Even if I eliminate anything that makes me horny, pois symptoms will always occur.
Thanks for the response, Kingfisher
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Gluten Protein Alters Brain Prolactin (https://www.glutenfreesociety.org/gluten-protein-alters-brain-prolactin/)
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Gluten Protein Alters Brain Prolactin (https://www.glutenfreesociety.org/gluten-protein-alters-brain-prolactin/)
It mentions that gluten behaves like an opioid chemical that excretes prolactin.
obviously in order for prolactin to stay high, dopamine should stay low.
So this makes me quite intrigued with the effect of opioids/endorphins in POIS.
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WOW! Brillant !
I never tested my prolactine.
Dispite I'm negative for celiac disease, gluten may be the culprit of my digestive problems. But I need to test fodmaps too.
Bone soup (= glutamine? collagen ?) cleans my intestine, cure my stomach gastritis. Best method I've found.
But gluten clearly give me bloatings, abdominal pains, diarrheas.
Good job guys.
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Elevated prolactin is comon patern in poisers.
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Next time I blood-test my testosterone levels, can they easily test my prolactin, too?
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Yes. It"s an easy blood test parameter.
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Thank you, b_jim
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Next time I blood-test my testosterone levels, can they easily test my prolactin, too?
I'm surprised they haven't done this yet since T is low.
So this makes me quite intrigued with the effect of opioids/endorphins in POIS.
I had some events where I almost became stoned from an orgasm for an hour long. I did feel peacefully and stimuli from the environment had less effect, like you couldn't feel the wind rushing by when walking outside and sounds had less impact. Also I could not feel any pain as if I had taken a painkiller. I played a videogame many years ago where an effect was shown which had some in common with what I experienced: https://www.youtube.com/watch?v=YlG9xdbRu6Y
Compare the sound of the shotgun after the adrenaline shot and when he walks up the stairs at the end. It's just like that.
Endorphins/Adrenaline/dopamine???
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The thing is, opioid withdrawal theory is one of the suggested causes of POIS in some of the literature. However our symptoms do not fully align with opioid withdrawal. Still I would be very intrigued to try a low dose Naltrexone trial. Too bad it's not available in my country.
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99% of chance my yellow stools are caused by gluten.
I've stopped gluten 6 days ago and day after day I go back to the normal... Dispite I'm negative for celiac.
Blood test results soon.
Update : bloodtest is good except 1 liver paramater a bit too high and moderate hyperkalemia, strange :/
Update : creatinine ok. Maybe eat too much bananas ;D
You don't have to be celiac to be intolerant to gluten b_jim
Thanks, Iwillbeatthis. I will follow Fox strategy and avoid gluten during 3 months. In fact, it is possible that I will suppress gluten for the rest of my life. I don't want yellow stool and blood come back.
Maybe it will help my Pois too with a better absorption.
I'm not fine with this hyperkalemia but maybe it's normal.
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You don't have to be celiac to be intolerant to gluten b_jim
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Gluten Protein Alters Brain Prolactin (https://www.glutenfreesociety.org/gluten-protein-alters-brain-prolactin/)
It mentions that gluten behaves like an opioid chemical that excretes prolactin.
You could generalize this further: Food Proteins as Source of Opioid Peptides-A Review (https://www.ingentaconnect.com/contentone/ben/cmc/2016/00000023/00000009/art00006)
They can induce wheals and flares: Wheal and flare responses to opioids in humans. (https://europepmc.org/abstract/med/2470272)
My mother can have big wheals on her arms that spontanuously pop up and go. I believe I have pictures of them somewhere. The POIS positive skin testing could be an opioid related mechanism in some people.
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You could generalize this further: Food Proteins as Source of Opioid Peptides-A Review (https://www.ingentaconnect.com/contentone/ben/cmc/2016/00000023/00000009/art00006)
They can induce wheals and flares: Wheal and flare responses to opioids in humans. (https://europepmc.org/abstract/med/2470272)
My mother can have big wheals on her arms that spontanuously pop up and go. I believe I have pictures of them somewhere. The POIS positive skin testing could be an opioid related mechanism in some people.
You should focus on endorphin behavior. They play a role in excitement/stress/arousal/sex/ and even smoking which induces POIS for me.
Low dose Naltrexone can tell us a lot if it had an impact on our symptoms.
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My mother can have big wheals on her arms that spontanuously pop up and go. I believe I have pictures of them somewhere.
I think I'm confused with these definitions. It's a big red spot on her arm, not sure about the terminology.
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Next time I blood-test my testosterone levels, can they easily test my prolactin, too?
I'm surprised they haven't done this yet since T is low.
No. It’s *not* been low since 2009. With TRT.
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As a reply to Quantum
My DNA report shows Histamine related SNPs and I think it is directly related to POIS (at least for me)
"The DAO and HNMT genes both encode enzymes responsible for the breakdown of histamine within your body.
? You have genetic variants in the HNMT gene associated with reduced function, meaning that you may have
reduced ability to break histamines down effectively following exposure to environmental allergens."
I have noticed in the past how very similar my POIS symptoms are compared to histamine intolerance symptoms. It all makes sense to me since my POIS began specifically after a one month medical treatment with 3 different antibiotics at age 34. It severely damaged my microbiome and my ability to deal with histamine breakdown. Leaky gut, SIBO, dysbiosis... Immediately after this treatment I began reacting to high histamine foods and also I began suffering from POIS (although at that time in pre-internet 1986 I had no idea what was going on - it took me many years to figure it out). After ejaculation, I develop the same types of symptoms I get after ingestion of histamine rich foods, especially if a high level of stress is present (which also seems to contribute to increase histamine production). I have been periodically dealing with SIBO and other related conditions ever since. I am now 67 years old, so that was 33 years ago! Prior to this antibiotic exposure I had a very active sexual life without any issues at all. No POIS at all.
Needless to say I have been experimenting with stress reduction techniques, diet, probiotics and various supplements. I have had periods with very low level of POIS symptoms but as soon as I am in a difficult stressful situation or if I expand my diet to include more histamine rich foods (while traveling for example) or if my microbiome gets into a state of dysbiosis for various reasons, I need to redo all the work with a strict diet, positive neuroplasticity exercises (similar to meditation), and supplement with probiotics and more. This is where I am at currently.
The more we learn the better we can focus our actions and get results. Thanks for sharing your experience.
Hi Fox, and welcome to the forum !
I agree that many members had improvement when turning to a more healthy diet. Better nutrition is part of my own overall relief method. No more industrial food, no more MSG, no more aspartame, no more artificial flavor or color, no more refined sugar. And, for 4 years now, my green smoothies of organic veggies and fruits are an essential part of my diet. I have more energy now at 54 than I had at 35 :) I think a healthier diet would help anybody, not just POIS sufferers, so it is a logical first step for any POIS sufferer.
Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ? Flooding the guts with good bacteria really helps getting rid of the methane-producing ones. Clindamycine can help in theory to get rid of anaerobic bacteria, but after antibiotherapy is finished, the bacteria left will occupy the free space again, with time.
Channelopathies have been briefly discussed here. I do not exclude that it may be part of what causes my POIS, because taking potassium really helps with my fatigue, both for POIS and after physical exercise. As you mention in a previous post, it may be possible that a different set of unfavorable SNPs can be present in POIS sufferers, and depending on the specific set of SNPs one has, it determines the severity and exact symptoms list one shows when in POIS. This also would account for the fact that it seems to be more than just one type of POIS.
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Yes, we discused this meny times, a personaly agree that long
term antibiotics use can be bad, but, sometimes , we hawe no
choice and must be treated with antibiotics.
Some tipes of new generation of antibiotcs are baned in
eu, because i can damage CNS permanently and more stuff...
But look at this, short term antibiotic pois cure
https://www.reddit.com/r/POIS/comments/dav11q/i_might_have_cured_my_pois/
Sewerals pois cures are reported after short time antibiotics use.
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Yes this gives even more credibility to the idea that POIS (at least for some of us) and its resolution is mediated by the microbiome. 2 years ago I took some Rifaximin (a non-systemic antibiotic) for SIBO and besides helping with the SIBO symptoms it also decreased considerably my POIS symptoms. Rifaximin is quite selective and left a healthier microbiome in my guts while the combination of wide-spectrum antibiotics that I took in 1986 was very destructive and damaging. From memory I think it was Erythromycin, Tetracycline and something in the Penicillin family. Conversely I also noticed that different probiotics will make my symptoms better or worse. Bifidus genus un general is helping while Acidophilus varies according to the strain used. Bulcaricus makes it worse. Another winner for me are Megasporebiotic. My (and others) hypothesis is that some microorganisms are favorable to histamin degrading (a good thing) while others will produce more histamine (not a good thing).
Overall I believe that the intestinal microbiome rules a lot of health issues - both positively and negatively. We have to be careful with our choice of antibiotics and probiotics. Not to mention the prebiotics and our food choices in general.
Yes, we discused this meny times, a personaly agree that long
term antibiotics use can be bad, but, sometimes , we hawe no
choice and must be treated with antibiotics.
Some tipes of new generation of antibiotcs are baned in
eu, because i can damage CNS permanently and more stuff...
But look at this, short term antibiotic pois cure
https://www.reddit.com/r/POIS/comments/dav11q/i_might_have_cured_my_pois/
Sewerals pois cures are reported after short time antibiotics use.
-
Bob, question, do you hawe(had) amalgams on your teeth ?
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2 years ago I took some Rifaximin (a non-systemic antibiotic) for SIBO and besides helping with the SIBO symptoms it also decreased considerably my POIS symptoms.
Interesting, Rifaximin can modulate IL-8:
''This study by Vitali et al. demonstrated that rifaximin had the capacity alone (or in the presence of B. infantis) to increase PBMC production of IL-1β, IL-6, and TNF-α and that the production of IL-8 by HT29 cells was increased if rifaximin was administered alone (28). IL-8 production by HT29 cells was significantly reduced if rifaximin was administered with B. infantis (28). The last observation is of interest because IL-8 has been shown to play a role in the severity of EAEC infections (11), suggesting that IL-8 downregulation may ameliorate disease-related symptoms; however, the Vitali study showed that rifaximin alone increases IL-8 production, and in the present report, rifaximin downregulated IL-8 (and most cytokines detected in the supernatants of untreated and control antibiotic-treated HEp-2 cells).''
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2798526/
Interesting: ''Meanwhile, rifaximin prevented ileum histological alterations, restored intestinal barrier function and inhibited TLR-4/NF-κB signaling pathway activation.''
https://www.frontiersin.org/articles/10.3389/fcimb.2019.00044/full
I got an indication that I might have SIBO. IL-8 is elevated as well. These two might be related. Also food sensitivities, stool problems, stress and diet problems here Bob. No energy to go into detail at the moment. I have some pictures of anomalies in my stool from the past, maybe I should upload them.
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No amalgams since the late 80s.
Bob, question, do you hawe(had) amalgams on your teeth ?
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Interesting, Bob Morane, and welcome to the forum !
I too have challenge with histamine, but taking about 250mg vit C every morning helped me, in the long run, to reduce the histamine excess in my body ( vitamin C helps to boost histamine elimination). Quercetin also helps me a lot with histamine.
I agree that stress reduction is good too. I do not know what are positive neuroplasticity exercises, but I meditate every day, and it is good for many aspects of my health.
I cannot do DNA tests for SNPs for now, it would create problems with my business insurance, but when I will no longer own a business, I will most probably do a DNA test.
As a reply to Quantum
My DNA report shows Histamine related SNPs and I think it is directly related to POIS (at least for me)
"The DAO and HNMT genes both encode enzymes responsible for the breakdown of histamine within your body.
? You have genetic variants in the HNMT gene associated with reduced function, meaning that you may have
reduced ability to break histamines down effectively following exposure to environmental allergens."
I have noticed in the past how very similar my POIS symptoms are compared to histamine intolerance symptoms. It all makes sense to me since my POIS began specifically after a one month medical treatment with 3 different antibiotics at age 34. It severely damaged my microbiome and my ability to deal with histamine breakdown. Leaky gut, SIBO, dysbiosis... Immediately after this treatment I began reacting to high histamine foods and also I began suffering from POIS (although at that time in pre-internet 1986 I had no idea what was going on - it took me many years to figure it out). After ejaculation, I develop the same types of symptoms I get after ingestion of histamine rich foods, especially if a high level of stress is present (which also seems to contribute to increase histamine production). I have been periodically dealing with SIBO and other related conditions ever since. I am now 67 years old, so that was 33 years ago! Prior to this antibiotic exposure I had a very active sexual life without any issues at all. No POIS at all.
Needless to say I have been experimenting with stress reduction techniques, diet, probiotics and various supplements. I have had periods with very low level of POIS symptoms but as soon as I am in a difficult stressful situation or if I expand my diet to include more histamine rich foods (while traveling for example) or if my microbiome gets into a state of dysbiosis for various reasons, I need to redo all the work with a strict diet, positive neuroplasticity exercises (similar to meditation), and supplement with probiotics and more. This is where I am at currently.
The more we learn the better we can focus our actions and get results. Thanks for sharing your experience.
Hi Fox, and welcome to the forum !
I agree that many members had improvement when turning to a more healthy diet. Better nutrition is part of my own overall relief method. No more industrial food, no more MSG, no more aspartame, no more artificial flavor or color, no more refined sugar. And, for 4 years now, my green smoothies of organic veggies and fruits are an essential part of my diet. I have more energy now at 54 than I had at 35 :) I think a healthier diet would help anybody, not just POIS sufferers, so it is a logical first step for any POIS sufferer.
Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ? Flooding the guts with good bacteria really helps getting rid of the methane-producing ones. Clindamycine can help in theory to get rid of anaerobic bacteria, but after antibiotherapy is finished, the bacteria left will occupy the free space again, with time.
Channelopathies have been briefly discussed here. I do not exclude that it may be part of what causes my POIS, because taking potassium really helps with my fatigue, both for POIS and after physical exercise. As you mention in a previous post, it may be possible that a different set of unfavorable SNPs can be present in POIS sufferers, and depending on the specific set of SNPs one has, it determines the severity and exact symptoms list one shows when in POIS. This also would account for the fact that it seems to be more than just one type of POIS.
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Bob Morane,
Welcome to the forum!
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https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
''(++)presence of cryoglobulins.''
Hmm patients with mixed cryoglobulinemia benefit from a low antigen content (LAC) diet.
''The aim of low antigen content diet (LAC-diet) is the reduction of the high-molecular-weight exogenous substances crossing the mucosal barrier of the gut.''
Low-Antigen-Content Diet (http://web.tiscali.it/infolabsas/apher/write/diet.htm)
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men report about less symptoms of POIS after penetration sex than through masturbation. I wonder if this relates to the fact that man in a relationship eat probably more healthy food.
I think that normal sex releases a balanced soup or hormones. Body contact releases oxytocin - an antiinflammatory hormone that balances adrenaline. Masturbation releases a unhealthy balance or hormones and too much dopamine.
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Please do the poop-poll here: https://poiscenter.com/forums/index.php?topic=3597.msg37617#msg37617
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Rifaximin is quite selective and left a healthier microbiome in my guts...
It stimulates a few strains. I've read about it, not sure where. Probably a paper from this site:
https://www.siboinfo.com/studies.html
I could centralize this info somewhere.
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Zonulin antagonist:
Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available (https://forums.phoenixrising.me/threads/game-changing-leaky-gut-treatment-larazotide-acetate-will-soon-be-available.80702/)
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Among the several potential intestinal luminal stimuli that can trigger zonulin release, we identified small intestinal exposure to bacteria and gluten as the two more powerful triggers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/)
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Zonulin antagonist:
Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available (https://forums.phoenixrising.me/threads/game-changing-leaky-gut-treatment-larazotide-acetate-will-soon-be-available.80702/)
Nice, Great Forum
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Yes, we discused this meny times, a personaly agree that long
term antibiotics use can be bad, but, sometimes , we hawe no
choice and must be treated with antibiotics.
Some tipes of new generation of antibiotcs are baned in
eu, because i can damage CNS permanently and more stuff...
But look at this, short term antibiotic pois cure
https://www.reddit.com/r/POIS/comments/dav11q/i_might_have_cured_my_pois/
Sewerals pois cures are reported after short time antibiotics use.
This is horrifying to me, though, as my POIS attacks started the same month I was taking an antibiotic (took it for a month).
But it?s tempting. Numerous people say they?ve healed with antibiotics.
-
Yes, we discused this meny times, a personaly agree that long
term antibiotics use can be bad, but, sometimes , we hawe no
choice and must be treated with antibiotics.
Some tipes of new generation of antibiotcs are baned in
eu, because i can damage CNS permanently and more stuff...
But look at this, short term antibiotic pois cure
https://www.reddit.com/r/POIS/comments/dav11q/i_might_have_cured_my_pois/
Sewerals pois cures are reported after short time antibiotics use.
This is horrifying to me, though, as my POIS attacks started the same month I was taking an antibiotic (took it for a month).
But it?s tempting. Numerous people say they?ve healed with antibiotics.
Well, this boosts your gut theory. The antibiotics nuked your microbiome.
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This is horrifying to me, though, as my POIS attacks started the same month I was taking an antibiotic (took it for a month).
But it?s tempting. Numerous people say they?ve healed with antibiotics.
Maybe they combined the antibiotic with probiotic. What did you take the antibiotic for? You probably did not have SIBO since you did not have pois before the antibiotics. Mayby the antibiotics instead killed of the good bacteria only. But I dont think pois can start only by that thing. There must be some other issues as well, did you experience stress or bloating during or after the antibiotics and directly before pois?