Author Topic: POIS treatment: theory & supplement stack  (Read 348116 times)

Cursed

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Re: POIS cure: theory & supplement stack
« Reply #540 on: April 25, 2020, 03:42:52 PM »

  Both choline and tri-methyl gylcine (TMG, betaine) are converted to L-glycine when they donate their three methyl groups. Which means that choline and TMG are sources of glycine for the body. Can you share your article about creatine and a1A receptor? I am interested to read about this.

Thank you for your comprehensive reply.
Here's the study I had in mind:
"The Activation of α1-adrenoceptors Is Implicated in the Antidepressant-Like Effect of Creatine in the Tail Suspension Test"
https://pubmed.ncbi.nlm.nih.gov/23357536/

nanna1

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Re: POIS cure: theory & supplement stack
« Reply #541 on: April 30, 2020, 11:16:10 PM »
Thanks Cursed for sharing the paper! :)
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/

Unvers

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Re: POIS cure: theory & supplement stack
« Reply #542 on: August 15, 2020, 11:56:55 AM »
If Nanna has managed to solve his POIS at 100% which from his signature does not seem light to me since it embraces multiple clusters of symptoms, I would say that there is really hope for everyone, there is just a lack of money to finance the research and then in any case I don't know if the POIS follows the cascade he listed for each single poiser or if it changes slightly on each one.
« Last Edit: August 15, 2020, 11:59:30 AM by Unvers »

hapl

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Re: POIS cure: theory & supplement stack
« Reply #543 on: September 07, 2020, 01:17:29 PM »
I noticed someone asked Nanna but I didn't see a reply. Nanna said that benfotiamine was a huge help, but I noticed it was removed from the stack. What's the reason for that?

Thanks.

nanna1

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Re: POIS cure: theory & supplement stack
« Reply #544 on: September 14, 2020, 10:42:17 PM »
Hi hapl,
There are many supplements that can be beneficial to POIS that are not listed in the stack. I wanted the stack to reflect the bare minimum of what is required to remove symptoms. And also, I wanted the stack to be cost effective (not expensive) (see Cost effective alternatives for omega-3). If something is not absolutely required, then I removed it or crossed it out from the list. But if you want to take benfotiamine and don't care about how expensive (cost-wise) it is, then it may still benefit.
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/

nanna1

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Re: POIS cure: theory & supplement stack
« Reply #545 on: September 26, 2020, 10:44:58 PM »
   I was recently informed that there are still POIS papers discussing POIS as a semen allergy. So I wanted to comment about This. The paper (Stafie and Stafie, 2019) ruled out mastocytosis but then presented the hypothesis that POIS might be an autoimmune semen allergy. The paper of Stafie (2019) is very similar to Waldinger, et al. (2011) and Kim, et al. (2018)(Intralymphatic Immunotherapy With Autologous Semen in a Korean Man With Post-Orgasmic Illness Syndrome). The papers Waldinger (2011), Kim (2018) and Stafie (2019) all found elevated IgE in semen and produced positive skin prick test. But none of them was able to find an antigen associated with IgE, and they also did not have a healthy control group to compare their results to. In other words, they did not establish a cause and effect relationship between semen allergy and POIS.

  Then Attia, et al. (2013) published the paper Post-orgasmic illness syndrome: a case report (version 1; peer review: 3 approved with reservations, 1 not approved) which was reviewed by several famous POIS researchers, including 3.Goldmeier and 4.Waldinger. Abdalla Attia correctly argues that it is not possible for POIS to be caused by an allergy because the immune system would attack any part of reproductive system producing protein antigen (including sperm). Below is a direct quote from Attia's response to Waldinger's review of the paper:

"In regards to testing for allergic reactions, we would like to ask whether you think that the skin prick test is reliable as a diagnostic test for allergy. Is it valid to conclude that POIS patients are allergic to their own semen on the basis of this test and suggest that this is the cause of POIS? We would suggest that skin prick tests can lead to many false positive and negative results. As andrologists we know (and there is a body of evidence for this), that semen is regarded as foreign by the body and the immune system. Immune tolerance to semen is not present. Semen is separated from the immune system by a very competent blood-testis barrier that is formed by the highly efficient Sertoli-Sertoli cell junctional complex. We would suggest that this is not a "hypothetical membrane". In certain known pathological conditions this barrier may be broken. If this occurs, auto-antibodies can form against semen. Thus, if a subject's own semen is then injected intradermally, a reaction may take place as it is recognized as a foreign antigen. We would suggest that many people would get a positive reaction on the basis of such a prick test even though they do not suffer from POIS. If allergy to the patient's own semen is a suspected cause of POIS, it will be necessary to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to conduct immuno bead and MAR testing and to report on the patient's seminogram changes. This might also suggest that POIS patients would be mostly infertile due to formation of anti sperm antibodies.

  Given these concerns regarding prick testing, we do not believe that the cause of POIS is allergy to one's own semen and also have doubts about the use of hyposensitization as a possible treatment."

 -Post-orgasmic illness syndrome: a case report (Attia, et al., 2013) (reply to reviewer 4)

  After the Attia (2013) paper, Jiang, et. al. (2015) published "Postorgasmic illness syndrome (POIS) in a Chinese man: no proof for IgE-mediated allergy to semen", which is the most important POIS paper that I know of because this is the first POIS study to use a control group. Jiang (2015) showed that healthy (non-POIS) males also have semen IgE and positive skin prick allergy test. This validated Attia's (2011) reply to Waldinger, namely that semen allergy is a common and separate disease from POIS. People need to know that you can have more that one disease, and one disease does not necessarily cause another.

  After Attia, et al. (2013) and Jiang, et al. (2015), Waldinger revised his original hypothesis to exclude Type I IgE allergy from his description of POIS (Waldinger, 2016):
"POIS is not associated with increased total serum IgE concentrations." -Post orgasmic illness syndrome (MD Waldinger, 2016)

  Finally, the study "Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle" by Amicis et al. (2019) used a control group to show that men with POIS and men without POIS have similar clinical reations to dilute semen skin prick test and subcutaneous semen injections. The POIS patient did not have elevated semen IgE, but two of the non-POIS healthy controls did have elevated semen IgE. So semen allergy was shown to be a separate disease from POIS. Also, both Amicis et al. (2019) and Kim et al. (2018) showed that hypodesensitization therapy (autologous semen injections) failed to produce lasting reductions of POIS symptoms. Amicis et al. (2019) did find elevated IgG in the semen of the POIS patient. And medical test from POISers on this forum do not confirm any correlation between POIS and semen allergy:
  MCAS and mastocytosis test
--8 of us show normal trypase (mast cell activation syndrome) levels (itsmel, BluesBrother, nanna1, Vandemolen, Muon, Muon's brother, jakov, Simon66).
--11 of us show normal IgE (allergy) levels (BlueBrother, aswinpras06, certainlypois2, Vandemolen, kurtosis, rjmlr, Yin POIS Study, jakov, Depreux POIS study, kingfisher, Arata POIS study)
--3 of us show normal histamine levels (nanna1 tested histamine, itsmel and Muon tested histamine and N-methyl-histamine).
--1 of us show low histamine levels (Simon66, tested histamine and N-methyl-histamine)
--1 of us show normal PGD2 levels (muon).
--1 of us test negative for mastocytosis (Stafie POIS study)

   Autoimmunity test
--5 of us have normal autoimmune panel test (nanna1, quotz, Vandemolen, muon, Arata POIS study).
--1 of us show possible autoimmunity (Iwillbeatthis), correlated with positive EBV (HHV-4) infection
--1 of us show normal/negative autoimmune antibody test for onconeural antibodies, insulin, peripheral NMDA-receptor, adrenal-cortex, potassium channel, glutamic acid decarboxylase (Muon's brother)

  Inflammation
--4 show normal C reactive protein (CRP) (kingfisher, certainlypois2, BluesBrother, Simon66)
--3 show normal ESR (Simon66, nanna1, certainlypois2)
--1 complement system activity (C3a, C4) normal (BluesBrother)

  I think that the semen allergy hypothesis has been thoroughly studied and discredited. I suspect that men (both POISers and non-POISers) with elevated immunoglobins (IgE or IgG) in their semen have sexually transmitted diseases. Some infections like CMV and HPV can be transferred through non-sexual contact, fluid exchange or from mother to child at childbirth. This is my personal hypothesis: viruses and bacteria that enter the seminal fluid can also stimulate immune cells to produce IgE/IgG antibodies against those pathogens so that they do not infect the female or kill the sperm. Injecting those viruses or bacteria (and their IgE/IgG antibodies) back into the body is probably not a good idea. I hope this helps. :)
« Last Edit: September 26, 2020, 11:12:11 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/

Prospero

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Re: POIS cure: theory & supplement stack
« Reply #546 on: September 28, 2020, 04:22:23 PM »
Yes. What still makes me wonder if there is not something wrong with semen is that 1/ the quality of my sperm decreased importantly since I have POIS, I have now very few spermatozoa in each ejaculate ; and 2/ one of my symptoms after some time of arousal and the release of pre-cum is a pain in the testicle. But I guess that it can be explained without resorting to an allergy hypothesis.

15yrsAndCounting

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Re: POIS cure: theory & supplement stack
« Reply #547 on: October 12, 2020, 01:31:15 PM »
Hi Nana/Quantam,

what kind of autoimmune tests you guys did?
I have one more point , I have not tried SAM-e yet. I was on zoloft for three years & now off it for 3-4 months.

When I try l-tryptophan, i faced allergic reaction or more inflammation. With 5 HTP it was high heart rate & POTS kind of symptom.

My BP is normally high.

Any idea?

Finally I would like to say , when you guys supplement all these, do all of you guys have normal thyroid function.
Thyroid has helped me before.
« Last Edit: October 12, 2020, 09:19:02 PM by 15yrsAndCounting »

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #548 on: November 04, 2020, 06:00:39 PM »
I tried a new brand of Sam-e one week ago and it seems like the missing link in my brain for me. I now wake up not feeling foggy, the dysautonomia I was getting through weight lifting seems to have gone when I went to the gym, and I would actually feel good after exercise also when usually I end up feeling worse in recent times, I feel more confident sociable less autistic symptoms and motivated.
I've now found out if SAM-E is helpful then one of these problems was likely the case:
·        cellular methylation was dysfunction
·        histamine in the brain had been elevated
·        the level of pro/anti-inflammatory cytokines had been out of balance

https://epiphanyasd.blogspot.com/2015/02/autism-schizophrenia-histamine.html

quikot

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Re: POIS treatment: theory & supplement stack
« Reply #549 on: November 04, 2020, 09:18:45 PM »
Hi Iwillbeatthis, I have a barrage of questions regarding SAM-e...
- What's your SAM-e brand and dosage?
- Are you still taking it?
- Do you take it on empty stomach?
- Do you take it before or after exercise?
- Do you also take B12, B6, and/or Folic Acid?
- Do the positive effects of SAM-e last even when you don't take it?

I have the Life Extension brand SAM-e, enteric coated, 200mg. It says on the package to take it with B12, B6, and Folic Acid. But I'm not deficient in any of these vitamins and oversupplementation of B12/Folic Acid is linked to cancer.

My post exertional malaise is pretty bad though so I'm considering experimenting with SAM-e, as it could help with some symptoms, or at least improve my liver health/jaundice and mood.
« Last Edit: November 04, 2020, 09:51:38 PM by quikot »

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #550 on: November 13, 2020, 03:02:05 PM »
Hi Iwillbeatthis, I have a barrage of questions regarding SAM-e...
- What's your SAM-e brand and dosage?
- Are you still taking it?
- Do you take it on empty stomach?
- Do you take it before or after exercise?
- Do you also take B12, B6, and/or Folic Acid?
- Do the positive effects of SAM-e last even when you don't take it?

I have the Life Extension brand SAM-e, enteric coated, 200mg. It says on the package to take it with B12, B6, and Folic Acid. But I'm not deficient in any of these vitamins and oversupplementation of B12/Folic Acid is linked to cancer.

My post exertional malaise is pretty bad though so I'm considering experimenting with SAM-e, as it could help with some symptoms, or at least improve my liver health/jaundice and mood.

I'm taking Piping rock sam e 200mg on a empty stomach with jarrow methylb12, methyl folate b6 lozenge( I nibble around 1/6-1/4 of it this is key as I am super sensitive to methyl vitamins - larger amounts cause bad reactions) and eithe tmg or liposomal vitamin c , I think TMG works better though. I combine these with the supplement brain gain by algonot (it isn't needed) and also vagus nerve stimulator device.

I was taking it in the morning when I woke up, the first week I did have some stomach aches the next day and also come downs, fatigue and insomnia from it but now it seems to have levelled out. Some days I will take twice and some days I will only take once.

I would take it before exercise but the gyms have closed here now

I was also feeling super stimulated (in a good way) and confident from it for the first week but now that seems to have levelled out as well I still feel benefits, and I'm way more sociable and have less autistic symptoms from taking it.

Yes I think there are long lasting benefits and before if I even nibbled a methyl b12 methyl folate lozenge  or folinic acid without sam e I would feel bad for the next few days

BoneBroth

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Re: POIS treatment: theory & supplement stack
« Reply #551 on: November 14, 2020, 01:03:45 PM »
Question to Nanna1:

I read that your "POIS Cascade stack" should be taken daily to treat POIS/NE in a long term, but do you have any specific recommendations for what to take immidiately in the first minute/minutes after an orgasm (and the first/second day etcetera)? Is it for example important to take the "POIS Cascade stack" immidiately after the orgasm to get the least symptoms during the POIS period, or are there any other supplements or actions to take then? If so I will add it in this list of "post-packs": https://poiscenter.com/forums/index.php?topic=3578.msg37452#msg37452

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #552 on: December 01, 2020, 08:18:54 AM »
I have recently tried a supplement that is purely EPA with borage oil, and I feel a hundred times better than I was feeling before. When I have tried two other DHA fish oil types I didn't feel good at all. One being a now foods high strength DHA 500, EPA 250  and the other being a low strength dha and epa one. So maybe DHA is inflammatory for me

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #553 on: December 04, 2020, 08:38:09 AM »
I have recently tried a supplement that is purely EPA with borage oil, and I feel a hundred times better than I was feeling before. When I have tried two other DHA fish oil types I didn't feel good at all. One being a now foods high strength DHA 500, EPA 250  and the other being a low strength dha and epa one. So maybe DHA is inflammatory for me

"Professor Puri, Consultant at Hammersmith Hospital and Imperial College London, is the author of over 100 scientific papers and more than 20 books He explains: “In general it has been found that as the ratio of EPA to DHA rises in the supplement used in clinical trials of certain conditions, such as depression and attention-deficit hyperactivity disorder (ADHD), the ability of the supplement to improve the condition also rises.”

We are  not negating the use of DHA in all circumstances; its importance for the developing foetus, for example, cannot be over-emphasised. DHA also has properties which make it beneficial for cardiovascular and joint health. What should be recognised, however, is that these fatty acids have very distinct roles for health, particularly the role of EPA in brain function and mood disorders, for which DHA has little benefit. Studies have shown that for these conditions EPA alone is far more effective than in combination with DHA, which can inhibit the beneficial actions of EPA.

With the necessary co-factors the body can convert EPA into DHA as and when it needs it, preventing the unnecessary build-up which results from taking DHA in supplement form, thus avoiding any concerns about its high rate of oxidation"

What I use https://www.mind1st.co.uk/

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #554 on: December 18, 2020, 07:24:27 PM »
I don't think my symptoms are mast cell related I think they're because of what Nanna said : However, the release of arachidonic acid, or AA, is problematic since it is a key substrate for the production of inflammatory hormones by the enzymes 5-LOX, COX-2 and the CYP450 group [4]. It is the rapid release of AA and mass production of inflammatory hormones (such as prostaglandin E2) that triggers sickness associated with POIS.

I found a good article on Arachidonic Acid https://epiphanyasd.blogspot.com/2016/10/regulation-of-arachidonic-acid-aa.html
scroll to the bottom if you want to see the science part, Nanna you may be interested in this post. He recommends the calcium channel blocker :  verapamil - has a mucosal-protective effect that occurs as a consequence of reduced mucosal leukotriene synthesis and increased prostaglandin synthesis.

cn7

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Re: POIS treatment: theory & supplement stack
« Reply #555 on: December 19, 2020, 04:12:48 AM »
Do you still take borage oil ?

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #556 on: December 19, 2020, 07:04:02 AM »
Do you still take borage oil ?
yes I do its Epa oil with borage oil

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #557 on: December 27, 2020, 11:03:18 AM »
Pure EPA oil for ME/CFS

In the introductory chapter of this book, Professor Puri describes what he terms a breakthrough in the treatment of ME/CFS following his conclusion that a key component needed for treatment was a combination of ultra-pure EPA (completely free of any DHA) and virgin evening primrose oil. Such a product first became available in April 2004 and within 3 months he was seeing 80% of his ME/CFS patients who followed his recommendation to use this product making clinical improvements, some of which were striking.

He continues in chapters 2 and 3 by first giving an excellent background history and summary about ME/CFS, dismissing very effectively any remaining notion that it be a condition of psychological origin, and surmises that there is a great deal of evidence from a consideration of viral infections, changes in the immune system, blood fatty acid levels and brain biochemistry that persons experiencing the clinical features of M.E, as for example those involved in the Royal Free Hospital outbreak in 1955, are experiencing physical (organic) illness. He concludes that “the best explanation for the pattern of results seen in ME/CFS, with reduced NK cell activity, reduced Th 1 cell activity, increased Th 2 cell activity and increased Tc cell activity, is that there is a pre-existing long-term viral infection, to which the immune system is reacting.” page 30.

Throughout these two chapters, Professor Puri explains in straightforward terms the evidence he is using and why it is significant. He refers in some detail to studies which provide evidence of statistically significant lower values of both omega-3 and omega-6 fatty acids in red blood cells and that these would be representative of levels in brain cells. He also describes two Magnetic Resonance Spectroscopy (Neurospectroscopy) studies, which revealed statistically significant high ratios of choline/creatine and how several experts agree that this reflects a change in the turnover of fatty acids in cell membranes. All the blood, brain biochemistry and immune system findings described in Chapter 3 could be consistently brought together in one model, which provides a strong pointer to natural treatment with fatty acids.

Iwillbeatthis

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Re: POIS treatment: theory & supplement stack
« Reply #558 on: January 04, 2021, 08:38:51 AM »
https://www.youtube.com/watch?v=LOdh1jCjiw8&t=623s - Video of Professor Puri at the ME research conference in 2006 explaining how EPA/fatty acids help the immune system and CFS.

80% of his ME patients made significant improvements with pure epa oil, it is key that the oil contains no DHA, I hope that some people on this forum can try out the oil and see how it effects them, its very cheap to buy.

hapl

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Re: POIS treatment: theory & supplement stack
« Reply #559 on: January 04, 2021, 09:05:58 PM »
Interesting, I always thought DHA was a good thing. I have all the classic constant CFS symptoms in addition to POIS / MCAS / etc. I'll have to check into that. Any particular pure EPA brands you recommend?