Ideas on Herpes Induced POIS

[Muon]

Postural orthostatic tachycardia syndrome

"Prognosis depends on aetiology. Patients may have continuous symptoms. They may be unable to cope with their employment or normal daily activities. After post-viral episodes around 50% of patients recover in 2–5 years. Prognosis is good in adolescent patients. In the majority >90% respond to a combination of physical methods as well as pharmacotherapy. In the hyperadrenergic state patients will require life long treatment. In the secondary form the causative disorder has to be treated in order for patients to become symptom?free.

Pyridostigmine, an acetylcholine esterase inhibitor, has shown promising results in the management of POTS caused by post-viral infection and autoimmune disorders.29 Low dose combination therapy is better than high dose monotherapy."

[swell]

Thanks nanna1, I got HPV vaccinated by Gardasil9 a few days back.  I was fearing nasal congestion, but so far the vaccine has been ok, besides the fact, I have lost my strength - but that maybe somatic or hopefully NK cells getting created rapidly  

a) Would you have any ideas on healing gut lining?  I am considering L-Glutamine, though wondering if there is something better, since Glutamine is taken up by viruses as fuel.  I was trying to find some minimum glutamine dosage formula/info that if you take less than x mg, it will preferentially go to gut lining first foremost and not be sufficient enough to go towards pathogens.

b) when you get minute, if you are able to review my test results posted - 1st ever blood test done on me.  I feel forced to taking Iron 8mg daily, it is very therapeutic, prevents any Adderall induced headaches in me.  I thought I MUST have Iron deficiency anemia, but I dont see signs of anemia in my results.  Do you notice any other insights?  For one I see my innate immunity to be most active, but as a whole my immune system is low normal.  Link: https://poiscenter.com/forums/index.php?topic=3517.msg37283#msg37283

HPV vaccine: Most vaccines only work before infection. But there is some evidence that quadrivalent and 9-valent
 human papillomavirus (HPV) vaccines (9vHPV, Gardasil 9) are effective even after infection because it boost NK cell cytotoxicity and antiviral humoral immunity. T

[nanna1]

a) Would you have any ideas on healing gut lining?

b) when you get minute, if you are able to review my test results posted - 1st ever blood test done on me...
https://poiscenter.com/forums/index.php?topic=3517.msg37283#msg37283

Hi swell,
  Vitamin B9 (folate) and resistance starch help to heal the gut lining. Please do not overdose folate.
Resistance starch is a prebiotic (like fiber) that gut bacteria convert to butyric acid (butyrate). Butyrate is a growth factor for epithelial cells in the digestive tract and helps to reduce inflammation.

  I don't see any ranges or units in your blood test results. So I'm not sure what the numbers stand for. If you have some time, please include the "normal" range and the titer units for each test result. I hope then I could be of more help.

[swell]

Thanks Nanna1, I do eat a lot of fiber (resistant starch and take butyrate too) and take Methyl Folate 50% RDA every other day.   Surprisingly when I take Folinic (that I think gets to brain easily), even a small dosage, my muscles start to ache.   Ooops, I did just update the test results with units.

a) Would you have any ideas on healing gut lining?

b) when you get minute, if you are able to review my test results posted - 1st ever blood test done on me...
https://poiscenter.com/forums/index.php?topic=3517.msg37283#msg37283

Hi swell,
  Vitamin B9 (folate) and resistance starch help to heal the gut lining. Please do not overdose folate.
Resistance starch is a prebiotic (like fiber) that gut bacteria convert to butyric acid (butyrate). Butyrate is a growth factor for epithelial cells in the digestive tract and helps to reduce inflammation.

  I don't see any ranges or units in your blood test results. So I'm not sure what the numbers stand for. If you have some time, please include the "normal" range and the titer units for each test result. I hope then I could be of more help.

[Muon]

If infection plays a part in POIS wouldn't you see more positive tests for autoantibodies? Not enough POISers have done autoantibody panels. And in addition to that, I haven't seen a single POISers who has done tests for adrenergic receptor autoantibodies. Autoantibodies against opioid receptors?

[swell]

I have had my general ANA panel Muon and my total count is too low.  While I tested negative, however, I could be wrong in my hypothesis that Auto-anti-bodies may be appearing (relatively) at a later stage in life, when body repair mechanisms are increasingly getting compromised, which is to say that in early mid life, despite having an issue (for e.g. with opoid receptors), your body would resist creating ANA's, till as long as it can. 

If infection plays a part in POIS wouldn't you see more positive tests for autoantibodies? Not enough POISers have done autoantibody panels. And in addition to that, I haven't seen a single POISers who has done tests for adrenergic receptor autoantibodies. Autoantibodies against opioid receptors?

[Muon]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Human Herpesviruses Are Back!

Furthermore, it was demonstrated that EBV dUTPase is secreted in exosomes from chemically induced Raji cells at sufficient levels to induce NF-?B activation and cytokine secretion in hDCs and PBMCs through a TLR 2-dependent mechanism [72]. Exosomes are produced by numerous cell types, have been implicated in numerous diseases, including ME/CFS [84], and are capable of trafficking to various organs within the body, including the brain, where they function as intercellular messengers.

A virus that is changing exosome content?

Exosomes in human semen carry a distinctive repertoire of small non-coding RNAs with potential regulatory functions

Extracellular vesicles in human semen modulate antigen-presenting cell function and decrease downstream antiviral T cell responses

[Muon]

ME/CFS Research: Herpes Autoimmune Spectrum Disorder

[Mr Raba]

Found this blog comment by coincidence. It sounds intriguing..


Explaining ME/CFS? Prusty / Naviaux Study Ties Infections to Energy Breakdowns

Ric on April 27, 2020 at 10:28 pm
Cort,
I have both CFS and POIS. Both simultaneously onset same day

In 1993.
Post Orgasmic Syndrome is a NORD validated rare disease. Where men crash with severe CFS like symptoms for 2 to 5 days after every ejaculation takes place (does not matter how (sex, nocturnal emissions etc.)).

The symptoms are amazingly similar as as a bad CFS crash. But most men go back to higher plateau of functioning than people with CFS (unless they have both) in 2 to 5 days. For me 3.

Imagine the study gem this entails. The whole cycle ALWAYS happens. So it could show volumes if tracked daily monitoring multiple biomarkers.

Dr Maria Vera who works in Dr. Klimas office said to me ?EBV has an affinity for sexual organs like the testis?.

Light went on. These thousands of men could be the missing men in CFS! Testosterone goes down after ejaculation and it takes a few days to come back. The things that help them are exactly the same as what helps people with CFS. The similarities are perplexing. To the extreme that I have given them lots of good material from CFS that they use now to alleviate symptoms. Many are just waiting for the CFS cure with the hope it will somehow benefit them.

I have long suspected that herpes type virus are involved in POIS. I came down with EBV then POIS + CFS simultaneously. So the link is there for me. I am not the only man who has both. Note that hormonal changes activate herpes viruses as well.

Studying this cohort could shed so much light into both CFS and POIS.

The problem I have is that few people with one label bother to look at the other. That is different they conjecture.

I have both and I believe they are one and the same. Except POIS. Is what these men call their short term CFS episodes.

More on POIS at

https://poiscenter.com/forums/index.php

Can you please consider taking a look bringing the group to researches attention? It could be the missing link in these diseases spectrum.

I don't know who this Ric is, but after reading nanna1's post about the NK cells, I had the same thoughts.

I am Ric.  Mr Raba in this forum. 

[nanna1]

"When peripheral nerve fibers are hypersensitive from nerve injury due to viral infection, in addition to the drug therapy for infection, use of Vitamin B1, 25 mg., 2 times a day for an average adult often accelerates recovery time. As an anti-viral agent for the herpes virus family, the author found that EPA (Omega 3 fish oil, Eicosa Pentaenoic Acid, C20:5 omega 3), at doses between 180 mg. and 350 mg (depending upon body weight) 4 times a day for 2 to 6 weeks, without prescribing the common anti-viral agent Acyclovir, often eliminated the symptoms due to viral infection including all well-known types of the herpes virus, such as herpes simplex virus, Epstein-Barr virus, and cytomegalovirus."

Treatment of acute or chronic severe, intractable pain and other intractable medical problems associated with unrecognized viral or bacterial infection: Part I (1990)

[nanna1]

Post-viral fatigue is associated with various infectious diseases (SARS coronavirus, Epstein-Barr virus, Ross River virus, enteroviruses, human herpesvirus-6, Ebola virus, West Nile virus, Dengue virus, and parvovirus; bacteria such as Borrelia burgdorferi, Coxiella burnetii, and Mycoplasma pneumoniae; and even parasites, such as Giardia lamblia), which often show very different symptoms during the acute stage [1]. Post-viral fatigue syndrome is rather similar to chronic fatigue syndrome (CFS). In this context, it is interesting to note that CFS often begins with an infection during a period of increased physical activity or stress.
-Feasibility of Vitamin C in the Treatment of Post Viral Fatigue with Focus on Long COVID, Based on a Systematic Review of IV Vitamin C on Fatigue (2021)

[Warrior]

Thanks for the clarification Nanna,
But what can we conclude from Neutropenia? Is it a sign of Sarcoidosis? Do we have an inflammation in lymphatic regions or deficiency in Neutrophils production? What does that exactly tell us when it comes to POIS?

Hi Nas,

  Low white blood cell counts can occur when the immune system is taxed and/or overwhelmed by something. However, I think it is too early to form conclusion about these results. We need more data. But here is a link for those who want to read about potential causes: https://en.wikipedia.org/wiki/White_blood_cell#Leucopenias

Hi Quantum,

  Thanks for specifying the correct name for the test (Complete Blood Count, CBC). The term "whole blood" is a technical term used to distinguish between types of blood test (blood plasma, serum, whole blood). But as you pointed out, the correct name for the test I was refering to is "complete blood count".
All of the blood cell numbers are important for this analysis. For example, several people show normal platelets but abnormal white blood cells (leukocytes, WBC). Both platelets and white blood cells are made from the same bone marrow and same stem cells. So the normal platelets helps to rule out disfunction of bone marrow or stem cells. Also, lymphocytes levels could indicate infection status. There is a lot more information in the CBC than neutrophil count. I don't think neutropenia causes POIS. But it could be that whatever is causing POIS is also taxing or compromising the immune system.

  I would encourge anyone who has CBC test to share even if they are normal. I don't want to try to prove any theories. The statistics will show which patterns are valid and how important are. But if people know whether or not they were experiencing POIS and which day of POIS when the CBC test was taken, that would be useful info.

Nanna

I want to take this exam contribute to the data.
How long after orgasm should I collect blood? I usually have POIS effects quite prominent on the first day after orgasm. If I go to the laboratory at 8:00 in the morning, what time should I have the orgasm?

I don't know the conditions underwhich each person took their CBC test. So I don't know the precise answer to the question. I didn't time my test around an orgasm, but before 2017 I was almost always in a pseudo-POIS fatigue/pain state that got worse after O. My guess is that the exact hour is not so critical. But to anwser Quantum's question, I'm not even sure what the dependence is on acute and chronic phases of POIS. Right now I'm just doing data analysis on whatever data is available. No clear interpretations yet.

I was reading about neutropenia.
Neutropenia can occur if the person is affected by an allergic reaction. So what is the purpose of seeing the number of neutrophils? If POIS is an allergic reaction, everyone with POIS is supposed to have neutropenia but this will not lead us to something new. Am I right?

  So far we don't have any data (published or on the forum) showing POIS to be caused by a specific allergy. There are many circustances that can cause neutropenia, but I think we should stick to the circumstances for which there is POISer data (published or on the forum). Neutropenia is extremely rare and that alone is significant. But I think the best thing is to look for statistical markers that can differentiate POISers from non-POISers. The results are open. So once we are sure we have a clear bio-markers, then people can interpret the results, form hypothesies and develop therapies how they see fit.

My results doing a CBC before AND after ejaculating with POIS. The difference is significant.
https://poiscenter.com/forums/index.php?topic=3964.msg46042#msg46042

I have some very interesting results to share.

I did a CBC after 11 days of abstinence. Right after the test was done, in the evening, I released twice. In the morning, I went to do another CBC. (Ordered both tests privately).

For many years I have had low neutrophils.

In the first CBC, my neutrophil count was 3.6. In the second CBC, taken the morning after 2 releases, my neutrophils were 2.1. This change literally happened in under 24 hours. I am currently not sick at all. This sudden and significant change in neutrophils are most likely caused by POIS.

Going to bring this experiment & result up with my functional med doc next time I see him.

Here are the results:

22/12/2022 2:50pm
https://gyazo.com/636415511d8fb29b7dac4104a63b3f48
Neutrophils 3.6

23/12/2022 8am
https://gyazo.com/abda0a1a284d88c8917f2d7d2fcc00ab
Neutrophils 2.1

I also have many blood tests dating back to 2020 with consistently low neutrophils, always around 1.8. I believe that my POIS solution has reduced the time my body is in the POIS state, and therefore gives my body a greater chance to get neutrophil ranges back to normal (hence 3.6 result after 11 days of abstience).

Also, the display of results between both days are different because I went to different pathologists (one I normally go to was closed).