A warning about SAMe, methylcobalamin, and high-dose B vitamins

Are there any reliable tests to show if we under or over methylate? Thanks

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If you use search terms “methlyation blood panel”, there are a multitude of different companies offering tests for methylation status, although I’m not sure if these tests carry any validity.

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Has anyone else tried Methylprednisolone?

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I’d try it but I doubt any doctors would prescribe it to me.

Maybe we should contact the PFS foundation regarding this?

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…Jumping the gun here and in true inveterate excitement, could we reasonably experiment with large doses of “available” DNMT1 inhibitors?

Found some here if so: https://www.frontiersin.org/articles/10.3389/fphar.2018.01144/full

And we did have a topic on this from way back, but I didn’t try it: Possible treatment for PFS - most of the “goodies” can be had from ebay (except the epilepsy meds.)

How does it sound? I’m not yet convinced I’ll start taking all these, not suggesting anyone does yet either!

EDIT - also upon reading that, this section stood out:
" The other is the tangling of the DNA around proteins (called histones): if the DNA is wrapped on itself, the molecular machines that should read the instruction contained in the DNA, cannot bind the DNA because there isn’t sufficient space. The ability of a histone to compact a DNA molecules (and thus repress gene expression) depends on the presence of particular molecules bound to the histone. The main one is the acetate group: if it binds to histone, forces him to expand and so molecular machines can come in and gene expression is activated. The acetyl groups are linked to histone by HAT and detached from it by HDAC. Also histones can be methylated in some particular positions, and this has mixed effects on gene expression."

I recall (regarding my current sulforaphane fetish) NYScientist’s recovery with it, which is a HDAC inhibitor.

Is any of this sensible or am I just a brainfogged individual and it’s actuallynothing useful?

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…Aaand it looks like Awor already tried this and the theory did the rounds: Reversing silenced AR signal with demethylating agents - A promising treatment option?

In the end it didn’t sort him.

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Sup dude. I am from the pssd forum. I have exactly the same experience with a week of betaine hcl (a methyl donor). I literally can not sleep, horrible derealisation, the little libido i had has left. The sleep is killing me. How are u now in these aspects? How much have u recovered from this? I hope its good news because it close to unbearable.

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Hello. I am responding here, rather than privately to the PM you sent.

This sucks. I feel for you. If you are going through what I did, then it was as bad as the initial crash, in a different way.

The good news, I am very much improved in nearly every aspect. 6 hours of sleep per night is now attainable, with only 1-2 brief interruptions, and I don’t feel amped-up or strung out during the day any longer. Derealization is gone. Frequent urination, gone. Libido and ED are back to where they were before taking the SAMe and Me-B12.

The bad news, it took 4 months to get over the worst of it and my sleep is still disturbed somewhat 8 months later.

No matter how bad this becomes, tough it out. Just be prepared for a terrible few months as a worst-case scenario.

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Yes dude i already was bordeline suicidal, but this has made me contact a suicide help foundation. Like u, I feel constantly wired. I was already looking for ways to demethylate myself, but this experience has convinced me we have a big problem in our genes. 4 months is a very long time. I hope i get through.

Btw, did u do anything to reverse this? Or did you just let time do its job? How much did u sleep before this? I finally had my insomnia in control through keto, and now this happened. I already had an appointment at a clinic specialized in methylation and diet, maybe they can help reverse things a bit. The betaine was an accident, didnt know it was a methyl donor. U are right btw it feels like a crash.

I didn’t intentionally follow any special methylation protocol either, but had SNPs indicative of deficient natural production of methyl donors and heard of some PAS and CFS patients having luck feeling better by supplementing with B vitamins and SAMe, so decided to take them. Huge mistake. I stopped the vitamins in late August and began to become fearful by late October that I had permanently sent myself into a state far worse than my baseline and that suicide was imminent. That’s why I must stress for you to give it time and not do anything rash even if you can’t bear the thought of being stuck in your current state. I tried Niacin as a recommended “demethylation protocol”, but it didn’t help whatsoever. I’m not convinced any of these alternative health practitioners who blog about methylation/demethylation really know what’s going on and decided to try to wait it out and see what the result was. It’s understandable that you are seeking help though, given how awful this makes you feel.

I didn’t experience insomnia after developing PAS, but instead had what could be considered “hypersomnia.” I could sleep 14 hours and still feel tired and it never mattered how much sleep I got, I always woke up feeling very fatigued and also had problems with daytime fatigue. This was beginning to improve on its own over the last decade, but after the SAMe and Me-B12, it was a complete 180.

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Just chiming in, having had similar upset following huge B12 dose, I returned to baseline and probably a little better (likely with the passing of time) after a couple of months. I had a few “goes” at B12 before I realised it was that.

It’ll suck but I also got past it. Feel for you bro.

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Yeaah i am quite sceptical myself. I also tried niacin past two days. First day i could sleep, no idea if it was because of the noacin or just because of exhaustion. 2nd day it didnt matter and everything was the same, totally wired. Its good to hear u came out of it, and the other guy who just posted here also did. I will just sit it out i guess. Knowing something will eventually diminish makes it less hard.

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You said betaine did this to you? There were others here saying that betaine+choline+ vitamin A gave them a huge return in genital sensitivity. Hard to know what to freakin trust on these forums anymore

That is what is so very perplexing about this condition. Almost across the board, everything that has been reported to modulate PFS/PAS/PSSD symptoms to an appreciable degree has produced contradictory results for different people.

And it can almost be stated as a law of nature: (okay, a little exaggeration) If it has the potential to modulate this condition, then it has some sort of anti-androgenic effect on some level. The SAMe and Me-B12 that worsened my symptoms severely for some time, are two of the few that don’t AFAIK.

Some examples of substances that have had both a very positive and very negative effect:

Cannabis (contains beta sitosterol, an active constituent of SP, and THC is an AA)
Tribulus (https://www.liebertpub.com/doi/abs/10.1089/met.2014.0136)
Finasteride (4-5 PAS patients claimed recovery from taking fin)
Saw Palmettto (couple PAS and PFS patients claimed improvements after taking SP)
Low-dose SSRI (Some PSSD patients noted long-term improvement from reinstatement of SSRI)
Soy products (phytoestrogens)
RU-486 (a progestin derivative with anti-androgenic effects, I believe a mild AR antagonist)
Progesterone and other Progestins (many progestin birth controls and progesterone, are 5-ar inhibitors)
Licorice root
Curcumin

I guess add betaine to the list with SAMe and Me-B12 of the few things that don’t appear to have an anti-androgenic effect. All 3 are methyl donors, which is interesting in itself.

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Dude, i am convinced for some of us the problem is silenced genes. The methyl donors just strengthen this problem. This experience just showed me. I did Ibogaine for 2 months and that had zero negative effect on pssd while being quite potent. Now i take like 2 weeks of a harmless methyl donor, bam, full blown crash. Every symptom worse, dick feels like rubber, insomnia etc. My path is finding a way to demethylate, I am convinced it is the key to all this in my case and maybe even yours.

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Hey man. Really dont want to bother you but i am really scared this shit is permanent. I had ok erections and penis health before this. Its now totally shrivelled rubbery and like an hourglass. Will this go back to normal? It just feels so unhealthy and numb. Does it really get better? Scared af, because i am used to things not getting better after the whole pssd experience. I am also speaking to another guy who had it after b12 and after 3 months is still fucked by it the same as in the beginning.

I’ve had these symptoms and they do fluctuate

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What do u mean? U got the symptoms from a methyl donor? And do u mean by fluctuate they dont go away but as u said, fluctuate

Like I said, I can’t make any guarantees, but it took 4-6 months to return to something near-baseline and the first 4 months were sheer suffering, with very little improvement. I mean, I said to myself “I’ve known this day would come for many years now, but I’ve finally reached that point,” and I was going insane believing I gave myself (supposedly impossible) permanent side effects for the second time around…

I first noticed trouble in late-August and the severity of the SAMe+B12 side effects peaked in mid-October, so your acquaintance may still be in the midst of it.

Ten months later and I am back at baseline except for residual insomnia.

So, it may take a very long time.

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