My symptoms last for a whole month. Any advice?

[Muon]

It's unknown which one works better. It is also unknown whether it will work for your specific case since most people that have done this method with some succes had allergic like physical symptoms + cognitive symptoms. I believe in standard allergies that ILIT is more effective than SCIT. It's no cure though, you could get permanent partial relief at best. POIS is probably not a true allergy.

[Nas]

Forget faster. Which works better. Also, since my symptoms are only mental / neurological...then doesn't that mean that maybe it's not an allergy in my case? how do you know it would work for my 'type' of POIS?

POIS is not an allergy. We don't actually know what POIS exactly is, but our best bet is that it's a form of hypersensitivity, which means it can be potentially an autoimmune disease.
Quantum proposed different types of POIS depending on duration and symptoms, but that's really just his own hypothesis; it doesn't mean that POISer don't share a common cause; which I think we do, that's why I really don't think POIS has multiple types; just multiple manifestations of the illness.

[nanna1]

What about a radical prostatectomy? If for some people the semen is what's causing the symptoms, like myself, then logically shouldn't removal of all organs that generate the semen be an effective 100% cure?

Hi Suffering1992,

  I am sorry to hear about your long-lasting symptoms. About 2 years ago, I used to have some POIS related symptoms that never fully went away. I am wondering though, why you believe that POIS is related to the prostate or semen?

• To my knowledge none of the POIS relate publications have identified an antigen or antibody that causes POIS. (also see post on antigens and antibodies)
• Women experience POIS also (Women with Post Orgasmic Illness Syndrome) but women do not produce semen. So semen production is not necessary to produce POIS.
• Your symptoms seem to come from the brain area. How will removing your prostate help your brain?

  I ask this because no legitimate doctor will remove your prostate without a good reason. It will take a really good reason to convince a surgeon to risk their medical license and perform a prostatectomy for an unrecognized disease.

  Since your symptoms last a very long time, it sounds like you could have reduced immune function or immune deficiency. Immune deficiency can make it harder to recover from certain types of infections. A lymphocyte subset panel test and complete blood count can help you know for sure. Supplements like melatonin, vitamin D3, AHCC, vitamin C and a vegan diet can help boost your immune function. High dose melatonin and AHCC have an effect similar to IL-2 immunotherapy which could make symptoms worse in the short-term until the underlying infection is suppressed. The longer it takes for the immune system to suppress an infection, the longer the symptoms of that infection tend to last. This is why people boost their immune system with zinc, B vitamins and C vitamins when they have the flu. Two stacks that provide full relief for me can be found here. These stacks focus more on the inflammatory trigger for POIS and do not treat any underlying infection. I only take the POIS Cascade Stack+vegan diet. I can hear the desperation in your post. I hope you find relief soon.

[Muon]

I don't think it's the prostate. There could be something going on with the Bulbourethral gland or seminal vesicles in men and the Bartholin's gland in women. As in interaction with their products.
https://en.m.wikipedia.org/wiki/Bulbourethral_gland
https://en.m.wikipedia.org/wiki/Bartholin%27s_gland
https://en.m.wikipedia.org/wiki/Seminal_vesicle
My point is that other organs and their products could be involved in pois. Like nanna said they won't remove your prostate without good reason. Removing the prostate doesn't make much sense when you don't know the cause. The problem could also be caused by aforementioned organs. What are you going to do, remove them all? Perhaps the problem lies within your immune system. You might get additional infections when removing something.

[Nas]

So if we assume any of these glands is the culprit, why isn't that and in specific attacked by the immune system directly? Shouldn't it be inflammed if we did am MRI? Also aren't there medical ways to inhibit the secretion of these glands?

[Suffering1992]

What about a radical prostatectomy? If for some people the semen is what's causing the symptoms, like myself, then logically shouldn't removal of all organs that generate the semen be an effective 100% cure?

Hi Suffering1992,

  I am sorry to hear about your long-lasting symptoms. About 2 years ago, I used to have some POIS related symptoms that never fully went away. I am wondering though, why you believe that POIS is related to the prostate or semen?

• To my knowledge none of the POIS relate publications have identified an antigen or antibody that causes POIS. (also see post on antigens and antibodies)
• Women experience POIS also (Women with Post Orgasmic Illness Syndrome) but women do not produce semen. So semen production is not necessary to produce POIS.
• Your symptoms seem to come from the brain area. How will removing your prostate help your brain?

  I ask this because no legitimate doctor will remove your prostate without a good reason. It will take a really good reason to convince a surgeon to risk their medical license and perform a prostatectomy for an unrecognized disease.

  Since your symptoms last a very long time, it sounds like you could have reduced immune function or immune deficiency. Immune deficiency can make it harder to recover from certain types of infections. A lymphocyte subset panel test and complete blood count can help you know for sure. Supplements like melatonin, vitamin D3, AHCC, vitamin C and a vegan diet can help boost your immune function. High dose melatonin and AHCC have an effect similar to IL-2 immunotherapy which could make symptoms worse in the short-term until the underlying infection is suppressed. The longer it takes for the immune system to suppress an infection, the longer the symptoms of that infection tend to last. This is why people boost their immune system with zinc, B vitamins and C vitamins when they have the flu. Two stacks that provide full relief for me can be found here. These stacks focus more on the inflammatory trigger for POIS and do not treat any underlying infection. I only take the POIS Cascade Stack+vegan diet. I can hear the desperation in your post. I hope you find relief soon.

Waldinger says that the hypothesis as to why some women suffer the same symptoms is due to an unknown AgE or whatever it's called related to the Prostatic-tissue, not from the semen itself. just like male POIS counterparts. He theorizes this in the latest 2016 article.

Also, as I said, I only suffer neurological symptoms proportionate to how much seminal fluid comes out. In the past, if I would get really excited and a bit of semen would 'leak' out..I would suffer milder symptoms w/o ever attaining orgasm. The amount of orgasms I get is completely irrelevant. the symptom severity and duration is uniform regardless of subsequent orgasm count.

There could be a cytokine storm triggered by unknown enzymes or chemicals in the semen [not the semen itself, mind you] which is also triggered by any other organs that also generate the semen upon ejaculation.

Removal of the organs will necessitate a lack of immune-response to the chemicals. Ie: Dry Ejaculations.

This has been anecdotally proven by a couple of people with the condition.

Lastly, POIS isn't an unrecognized disease. It's been in medical literature since 2002. It's just a rare disease. And rare diseases require experimental science to see if this procedure can really work. 

[demografx]

Just a wild & crazy thought, Su1992. I never recommend psychiatrists for POIS but this NYC doc wrote an article that tells me he’s possibly in a position (an unusual one for a psychiatrist) to understand POIS. He’s also written about prostate cancer.

This article is on our POISCenter Intro Page
New York Times article he wrote (2009):

Mind
Sex and Depression:
In the Brain, if Not the Mind - - emphasis mine, demo

By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse


Phone
+1 212 746 5775
Primary Email
rafriedm@med.cornell.edu
Bio:
http://vivo.med.cornell.edu/display/cwid-rafriedm

[Nas]

Lastly, POIS isn't an unrecognized disease. It's been in medical literature since 2002. It's just a rare disease. And rare diseases require experimental science to see if this procedure can really work.

Not really, it was really discovered by Waldinger and certain papers were published on it but they're all still in a primitive form and the medical community doesn't recognize it yet, until a more detailed investigation can show case the actual mechanism of this illness. Hope fully the upcoming NORD investigation can try to identify the mechanism.

[demografx]

You might get additional infections when removing something.

Interesting point, Muon.

[demografx]

Hopefully the upcoming NORD investigation can try to identify the [POIS] mechanism.

I haven’t lost hope in my 12 years at this forum. Desperate times? Yes. Maybe I’m a fool but I just can’t give up!

[nanna1]

Hi Suffering1992,
Here are a few ideas that have been proposed in the literature related to potential causes of POIS:

• Progesterone deficiency, "Benign coital headache relieved by partner's pregnancies with implications for future treatment" (Selwyn Dexter, 2009)
• Neuroendocrine malfunction, "CASE REPORT: Postorgasm Illness Syndrome: A Spectrum of Illnesses" (Ashby and Goldmeier, 2010)
• Semen IgE allergy (type I) and antigen (type IV), "Postorgasmic Illness Syndrome (POIS) in 45 Dutch caucasian males: clinical characteristics and evidence for an immunogenic pathogenesis (Part 1)." (Waldinger, et al, 2011)
• Non-semen related allergy/hypersensitivity, "Post-orgasmic illness syndrome: a case report" (Attia, et al, 2013)
• Mu-opioid receptor dysfunction, "Postorgasmic Illness Syndrome (POIS) in a Chinese Man: No Proof for IgE‐Mediated Allergy to Semen" (Jia Yin, et al, 2015)
• (for sex headaches) Renin/Angiostentin induced alpha1-adrenergic receptor over-expression, "Successful Reversal of Intractable Sexual Headache by Renin Antagonist" (Wei-Hsi Chen, et al, 2015)
• Semen antigen (type IV) only, "Post orgasmic illness syndrome (POIS)" (Waldinger, 2016)
• Semen IgE allergy (type I), "Intralymphatic Immunotherapy With Autologous Semen in a Korean Man With Post-Orgasmic Illness Syndrome" (Lee, et al 2018)
• Neurobiological mechanism, "Negative allergy study in a case of postorgasmic illness syndrome (POIS)" (N. Depreux, et al, 2018)

  Dr. Waldinger did a good job of recording and classifying symptoms related to POIS in addition to proposing the name "Post-Orgasmic Illness Syndrome". However, he did not take a rigorous scientific approach when developing his different hypotheses:

"Limitations of the studies by Waldinger et al. include a lack of healthy control men for the autologous semen SPT results and the observational study design."
Post-Orgasmic Illness Syndrome: A Review (Hellstrom, 2018)

  Dr. Waldinger has had more than one hypothesis for POIS and has even discussed oxytocin as being a possible trigger (Waldinger, Schweitzer, 2002). So, I think it is premature to trust Dr. Waldinger's newest hypothesis when he has not found an antigen or antibody to support autoimmunity.

Lastly, POIS isn't an unrecognized disease. It's been in medical literature since 2002. It's just a rare disease.

   I should be more precise in how I word things. I should have said, "There is no recognized cause or location in the body for this disease." I was only trying to provide some constructive criticism and save you some time. Thanks Suffering1992!

[Suffering1992]

Hi Suffering1992,
Here are a few ideas that have been proposed in the literature related to potential causes of POIS:

• Progesterone deficiency, "Benign coital headache relieved by partner's pregnancies with implications for future treatment" (Selwyn Dexter, 2009)
• neuroendocrine malfunction, "CASE REPORT: Postorgasm Illness Syndrome: A Spectrum of Illnesses" (Ashby and Goldmeier, 2010)
• IgE allergy (type I) and antigen (type IV), "Postorgasmic Illness Syndrome (POIS) in 45 Dutch caucasian males: clinical characteristics and evidence for an immunogenic pathogenesis (Part 1)." (Waldinger, et al, 2011)
• mu-opioid receptor dysfunction, "Postorgasmic Illness Syndrome (POIS) in a Chinese Man: No Proof for IgE‐Mediated Allergy to Semen" (Jia Yin, et al, 2015)
• (for sex headaches) Renin/Angiostentin induced alpha1-adrenergic receptor over-expression, "Successful Reversal of Intractable Sexual Headache by Renin Antagonist" (Wei-Hsi Chen, et al, 2015)
• Only antigen (type IV), "Post orgasmic illness syndrome (POIS)" (Waldinger, 2016)
• IgE allergy (type I), "Intralymphatic Immunotherapy With Autologous Semen in a Korean Man With Post-Orgasmic Illness Syndrome" (Lee, et al 2018)
• neurobiological mechanism, "Negative allergy study in a case of postorgasmic illness syndrome (POIS)" (M. Pascal, et al, 2018)

  Dr. Waldinger did a good job of recording and classifying symptoms related to POIS in addition to proposing the name "Post-Orgasmic Illness Syndrome". However, he did not take a rigorous scientific approach when developing his different hypotheses:

"Limitations of the studies by Waldinger et al. include a lack of healthy control men for the autologous semen SPT results and the observational study design."
Post-Orgasmic Illness Syndrome: A Review (Hellstrom, 2018)

  Dr. Waldinger has had more than one hypothesis for POIS and has even discussed oxytocin as being a possible trigger (Waldinger, Schweitzer, 2002). So, I think it is premature to trust Dr. Waldinger's newest hypothesis when he has not found an antigen or antibody to support autoimmunity.

Lastly, POIS isn't an unrecognized disease. It's been in medical literature since 2002. It's just a rare disease.

   I should be more precise in how I word things. I should have said, "There is no recognized cause or location in the body for this disease." I was only trying to provide some constructive criticism and save you some time. Thanks Suffering1992!

pretty interesting. so I have a question; if POIS isn't an autoimmunity..then how do you explain why orgasms don't give me the symptoms? Or least, the symptoms are proportionate to the seminal fluid that is triggered out? I only get symptoms from ejaculations, not from the orgasm. Are cytokines not a signature of autoimmunity? Do we have tech that allows us to 'see' or observe cytokines / T-Cell / B-Cell proliferation in-real time immediately after ejaculation? If we can do that...then we can be one step closer to finding cause. Observe cytokinetic activity in real-time for victims. Especially for guys like me who's symptoms last an entire month. With symptom severity different at each week.  What do you think?

[Nas]

I personally lean in the direction of it being an autoimmune disease. It's the most of all the theories that make sense. Maybe Nanna is too confident in his own theory but I still think that POIS is closer to an autoimmune hypersensitivity reaction, which would explain my chronic urethritis that only gets worst with ejaculation.

[nanna1]

pretty interesting. so I have a question; if POIS isn't an autoimmunity..then how do you explain why orgasms don't give me the symptoms? Or least, the symptoms are proportionate to the seminal fluid that is triggered out? I only get symptoms from ejaculations, not from the orgasm.

  That's cool that you were able to identify a correlation between ejaculation and POIS symptoms. I think your observation can be explained by the fact that norepinephrine triggers ejaculation but not orgasm. Norepinephrine (noradrenaline) and epinephrine (adrenaline) are released during orgasm.

Norepinephrine triggers ejaculation through the alpha1-adrenergic receptor (Ref). Norepinephrine also reactivates latent infections in the body (post1, post2, human study 1, human study 2). So when there is a rise in norepinephrine due to sexual activity, there is both ejaculation and infection-reactivation simultaneously. Since norepinephrine causes both these events, they can occur at the same time.

  In most normal people (both men and women), natural killer cells (NK cells, CD56+) rise during sexual activity.

Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)

  I believe that this increase in immune activity is a way for the body to suppress latent infections during sexual activity and prevent pathogens from spreading to sexual partners. So NK cells (and possibly also neutrophils) are actively preventing sexually transmitted disease (STD, STI) through their sex-induced increase in activity. And this sex induced increase in immune function is what occurs in normal non-POIS men and women.

  However, one idea that I have not been able to demonstrate or disprove with the data is the idea that POIS could be caused by an immune deficiency of the innate immune system. POISers seem to have statistically more immune deficiency than the general population (post1, post2). So I wonder if in POISers, the sex-induced increase NK cell activity does not occur. For example,

--1 of us show lymphocytes do not increase in response to lung infection (aswinpras06)

Low or unresponsive lymphocyte levels is a problem because total lymphocyte counts are supposed to increase during sexual activity.

Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)

To test an immune deficiency hypothesis, we would need timed NK cell counts in POISers to compare with normal changes in NK cell counts that occur during sexual activity.

Are cytokines not a signature of autoimmunity? Do we have tech that allows us to 'see' or observe cytokines / T-Cell / B-Cell proliferation in-real time immediately after ejaculation? If we can do that...then we can be one step closer to finding cause. Observe cytokinetic activity in real-time for victims. Especially for guys like me who's symptoms last an entire month. With symptom severity different at each week.  What do you think?

  Cytokines are just general signalling molecules that immune cells use to talk to one-another or other cells. Cytokines are released when the immune system is addressing cancer, poison, physical injury, autoimmunity, allergy and infections.
  I started a thread devoted to exactly your question about measuring in real-time. You can find it here (Neuroendocrine responses to arousal and orgasm). It includes the time course for various neuroendocrine hormones, neurotransmitters, heart parameters, immune cells and cytokines during sexual activity. Current parameters listed are: prolactin, testosterone, follicle stimulating hormone (FSH), Luteinizing hormone (LH), cortisol, growth hormone (GH), dopamine, histamine, adrenaline (epinephrine), noradrenaline (norepinephrine), oxytocin, vasopressin, beta-endorphin, melatonin, blood pressure (systolic, diastolic), heart rate, natural killer cells, T cells, B cells, and cytokines (IL-6 and TNF-alpha). These parameters are measured in non-POIS men and women, so we can use this data as an effective control group. Thanks Suffering1992 for the interesting questions!

[Suffering1992]

pretty interesting. so I have a question; if POIS isn't an autoimmunity..then how do you explain why orgasms don't give me the symptoms? Or least, the symptoms are proportionate to the seminal fluid that is triggered out? I only get symptoms from ejaculations, not from the orgasm.

  That's cool that you were able to identify a correlation between ejaculation and POIS symptoms. I think your observation can be explained by the fact that norepinephrine triggers ejaculation but not orgasm. Norepinephrine (noradrenaline) and epinephrine (adrenaline) are released during orgasm.

Norepinephrine triggers ejaculation through the alpha1-adrenergic receptor (Ref). Norepinephrine also reactivates latent infections in the body (post1, post2, human study 1, human study 2). So when there is a rise in norepinephrine due to sexual activity, there is both ejaculation and infection-reactivation simultaneously. Since norepinephrine causes both these events, they can occur at the same time.

  In most normal people (both men and women), natural killer cells (NK cells, CD56+) rise during sexual activity.

Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)

  I believe that this increase in immune activity is a way for the body to suppress latent infections during sexual activity and prevent pathogens from spreading to sexual partners. So NK cells (and possibly also neutrophils) are actively preventing sexually transmitted disease (STD, STI) through their sex-induced increase in activity. And this sex induced increase in immune function is what occurs in normal non-POIS men and women.

  However, one idea that I have not been able to demonstrate or disprove with the data is the idea that POIS could be caused by an immune deficiency of the innate immune system. POISers seem to have statistically more immune deficiency than the general population (post1, post2). So I wonder if in POISers, the sex-induced increase NK cell activity does not occur. For example,

--1 of us show lymphocytes do not increase in response to lung infection (aswinpras06)

Low or unresponsive lymphocyte levels is a problem because total lymphocyte counts are supposed to increase during sexual activity.

Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004)

To test an immune deficiency hypothesis, we would need timed NK cell counts in POISers to compare with normal changes in NK cell counts that occur during sexual activity.

Are cytokines not a signature of autoimmunity? Do we have tech that allows us to 'see' or observe cytokines / T-Cell / B-Cell proliferation in-real time immediately after ejaculation? If we can do that...then we can be one step closer to finding cause. Observe cytokinetic activity in real-time for victims. Especially for guys like me who's symptoms last an entire month. With symptom severity different at each week.  What do you think?

  Cytokines are just general signalling molecules that immune cells use to talk to one-another or other cells. Cytokines are released when the immune system is addressing cancer, poison, physical injury, autoimmunity, allergy and infections.
  I started a thread devoted to exactly your question about measuring in real-time. You can find it here (Neuroendocrine responses to arousal and orgasm). It includes the time course for various neuroendocrine hormones, neurotransmitters, heart parameters, immune cells and cytokines during sexual activity. Current parameters listed are: prolactin, testosterone, follicle stimulating hormone (FSH), Luteinizing hormone (LH), cortisol, growth hormone (GH), dopamine, histamine, adrenaline (epinephrine), noradrenaline (norepinephrine), oxytocin, vasopressin, beta-endorphin, melatonin, blood pressure (systolic, diastolic), heart rate, natural killer cells, T cells, B cells, and cytokines (IL-6 and TNF-alpha). These parameters are measured in non-POIS men and women, so we can use this data as an effective control group. Thanks Suffering1992 for the interesting questions!

Interesting. so if I may ask another question and back to surgery and theory: if you remove the organs that generate the seminal fluid which contains the enzymes or peptides that the body is auto-reacting to, then is it possible to, in theory, inhibit the faulty Norepinephrine signal entirely? Or would the Norepinephrine defect still occur in absence of the chemicals in the fluid that are being 'sensed' by the ejaculatory canal or whatever?  Sorry if the question is vague. I'm not well-versed in this as you are.

[nanna1]

Interesting. so if I may ask another question and back to surgery and theory: if you remove the organs that generate the seminal fluid which contains the enzymes or peptides that the body is auto-reacting to, then is it possible to, in theory, inhibit the faulty Norepinephrine signal entirely? Or would the Norepinephrine defect still occur in absence of the chemicals in the fluid that are being 'sensed' by the ejaculatory canal or whatever?  Sorry if the question is vague. I'm not well-versed in this as you are.

Hi Suffering1992,

  The short answer is I do not know the answer to that question. If someone removes an antigen releasing (auto-reacting) organ, it does not mean that you are removing the cause of the autoimmunity. Herpes viruses are known to be causative factors for several autoimmune diseases such as myasthenia gravis, viral encephalitis, systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA) and Guillain-Barr Syndrome. Herpes viruses are not the only cause of autoimmunity, but they are a well-known cause. A partial list of diseases (including autoimmune diseases) caused by herpes viruses can be found here with scientific references (Diseases associated with herpes virus infection). You would have to know what the cause of the autoimmunity is first before knowing the answer to your question, because removing an organ does not remove Epstein Barr or cytomegalovirus.

  With that said, norepinephrine triggers viral reactivation, which is a different effect than autoimmunity. So I am not sure what direct connection there would be (if any) between the two effects. Norepinephrine triggers herpes virus reactivation independent of any antigen, antibody or autoimmune reaction.

  Below are some informative videos on the functions of the immune system. Video 2 explains how antigens and antibodies work and video 3 has some useful info on autoimmunity. The videos build on each other so it is best to watch them in order. The videos might seem basic, but they cover intermediate level concepts that are useful for this and other discussions on the forum.
1. https://www.youtube.com/watch?v=GIJK3dwCWCw
2. https://www.youtube.com/watch?v=2DFN4IBZ3rI
3. https://www.youtube.com/watch?v=rd2cf5hValM
4. https://www.youtube.com/watch?v=zQGOcOUBi6s

Cheers!

[Suffering1992]

Interesting. so if I may ask another question and back to surgery and theory: if you remove the organs that generate the seminal fluid which contains the enzymes or peptides that the body is auto-reacting to, then is it possible to, in theory, inhibit the faulty Norepinephrine signal entirely? Or would the Norepinephrine defect still occur in absence of the chemicals in the fluid that are being 'sensed' by the ejaculatory canal or whatever?  Sorry if the question is vague. I'm not well-versed in this as you are.

Hi Suffering1992,

  The short answer is I do not know the answer to that question. If someone removes an antigen releasing (auto-reacting) organ, it does not mean that you are removing the cause of the autoimmunity. Herpes viruses are known to be causative factors for several autoimmune diseases such as myasthenia gravis, viral encephalitis, systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA) and Guillain-Barr Syndrome. Herpes viruses are not the only cause of autoimmunity, but they are a well-known cause. A partial list of diseases (including autoimmune diseases) causes by herpes viruses can be found here with scientific references (Diseases associated with herpes virus infection). You would have to know what the cause of the autoimmunity is first before knowing the answer to your question, because removing an organ does not remove Epstein Barr or cytomegalovirus.

  With that said, norepinephrine triggers viral reactivation, which is a different effect than autoimmunity. So I am not sure what direct connection there would be (if any) between the two effects. Norepinephrine triggers herpes virus reactivation independent of any antigen, antibody or autoimmune reaction.

  Below are some informative videos on the functions of the immune system. Video 2 explains how antigens and antibodies work and video 3 has some useful info on autoimmunity. The videos build on each other so it is best to watch them in order. The videos might seem basic, but they cover intermediate level concepts that are useful for this and other discussions on the forum.
1. https://www.youtube.com/watch?v=GIJK3dwCWCw
2. https://www.youtube.com/watch?v=2DFN4IBZ3rI
3. https://www.youtube.com/watch?v=rd2cf5hValM
4. https://www.youtube.com/watch?v=zQGOcOUBi6s

Cheers!

Thank you. Just another question if you please don't mind. If you could explain a theory - could you explain why someone like me has symptoms which last an entire month? Wheras, the majority of people seem to have it at just a week interval? And why my symptoms are 100% neurological? And not a mixture of both like most?

Any speculation as to why this could be?

[nanna1]

...could you explain why someone like me has symptoms which last an entire month?

Hi Suffering1992, Based on your symptoms, this is my personal opinion. But do not take it as professional medical advice:

  Since your symptoms last a very long time, it sounds like you could have reduced immune function or immune deficiency. Immune deficiency can make it harder to recover from certain types of infections....The longer it takes for the immune system to suppress an infection, the longer the symptoms of that infection tend to last. This is why people boost their immune system with zinc, B vitamins and C vitamins when they have the flu...I hope you find relief soon.

Here is an example of a healthy immune response which could be viewed as a hypothesis for POIS.

   On the Disease Path (right side), there are many steps between Tryptophan and Natural Killer cells (NK cells). If one of these steps fails, then stress hormones like norepinephrine (Trigger Path, left side) will likely make the person sick (viral reactivation). For example, sleep deprivation reduces a persons immunity and makes them vulnerable to stress-induced sickness. And stress-induced sickness is often caused by viral shedding (human study 1, human study 2). On the other hand, if all of the steps between Tryptophan and NK cells succeed, then NK cells will suppress the reactivation of an infection and prevent stress-induced sickness. While NK cells mostly respond to virus infections, neutrophils mostly respond to bacteria infections. So an analogous diagram could be drawn for neutrophils suppressing bacterial growth.

-----------

Wheras, the majority of people seem to have it at just a week interval?

   In my opinion, the amount of time a persons symptoms last will depend on the status of there immune system. For example, if someone has the flu (influenza), their symptoms will last longer if they are immune deficient or sleep deprived. A strong immune system helps a person fight the virus faster.

And why my symptoms are 100% neurological? And not a mixture of both like most?

Any speculation as to why this could be?

   If a person has an infection, the type of symptoms that person has will depend on the location of the infection. A cytomegalovirus infection in the brain vasculature (blood vessels) will have different symptoms than a cytomegalovirus infection in the heart vasculature which will have different symptoms than the same infection in the knee. The symptoms of any disease are tied to the location of that disease in the body. I discuss this in more detail here (POIS as a location-specific herpes infection).

[JohnJames]

Suffering, my POIS can lasts 3-4 weeks too.

Do you also suffer from restless legs syndrome?

Do you have any amalgam fillings in your teeth?

[sop]

I am not sure that I can be of much help to you, but I can tell you that I used to have these episodes for long periods... Days and sometimes weeks... One time it was for nearly 2 months, with only few days in between that I would feel good.
Last summer I discovered by chance that I had 2 holes on my back, one being my ass and the other turned out to be a pilonidal sinus cyst, that have been there for years. I had to undergo a surgery to remove it, and it turned out to be very big in size!
Ever since my surgery, my POIS episodes have decreased dramatically, now they stay for 2 days max, and sometimes ever 1 day... And even during my pois episode, I was not as useless and helpless as I used to be before.
My humble opinion that can be wrong, is that this cyst was creating lots of Inflammation that affected my whole body response to POIS.
I do not know much about your case, but there might be some weird reason that is keeping your body inflammated or something.
I hope I was of any help and I wish you and all other sufferers including myself to find a relief from this horrible condition.