Author Topic: My symptoms last for a whole month. Any advice?  (Read 1320 times)

nanna1

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Re: My symptoms last for a whole month. Any advice?
« Reply #30 on: February 25, 2019, 10:29:55 AM »
Hi Suffering1992,
Here are a few ideas that have been proposed in the literature related to potential causes of POIS:
  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! :)
« Last Edit: March 30, 2019, 01:14:33 PM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #31 on: February 25, 2019, 07:20:46 PM »
Hi Suffering1992,
Here are a few ideas that have been proposed in the literature related to potential causes of POIS:
  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

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Re: My symptoms last for a whole month. Any advice?
« Reply #32 on: February 25, 2019, 08:57:26 PM »
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

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Re: My symptoms last for a whole month. Any advice?
« Reply #33 on: February 25, 2019, 11:48:16 PM »
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.
  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.
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! :)
« Last Edit: February 26, 2019, 09:59:27 AM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #34 on: February 26, 2019, 06:30:38 PM »
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.
  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.
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

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Re: My symptoms last for a whole month. Any advice?
« Reply #35 on: February 27, 2019, 03:26:55 PM »
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!
« Last Edit: March 02, 2019, 07:45:04 AM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Suffering1992

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Re: My symptoms last for a whole month. Any advice?
« Reply #36 on: February 27, 2019, 08:32:18 PM »
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

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Re: My symptoms last for a whole month. Any advice?
« Reply #37 on: February 28, 2019, 10:52:07 PM »
...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).
« Last Edit: March 01, 2019, 08:00:50 AM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

JohnJames

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Re: My symptoms last for a whole month. Any advice?
« Reply #38 on: March 01, 2019, 02:42:09 AM »
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

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Re: My symptoms last for a whole month. Any advice?
« Reply #39 on: March 01, 2019, 05:29:25 PM »
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.

demografx

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Re: My symptoms last for a whole month. Any advice?
« Reply #40 on: March 01, 2019, 06:28:34 PM »
sop, belated Welcome to our Forum!
10 years of major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.