Is there a simple guide to methyl and/or choline?

[SpinachHands]

I've been trawling this forum trying to read everything I can about choline and methyl but it's all going over my head.

My partner has very severe ME and dysautonomia and is bedbound. Weirdly their ME has been improving massively, but their autonomic dysfunction/weird nervous system oversensitivity, is still worsening and keeping them from being able to act on their ME improvement in any way. New and worsening symptoms are cropping up every day and we're getting really scared.

Nearly every medicine we try seems to have a paradoxical effect or very bad reaction. LDN caused their dysautonomia in the first place, fludrocortisone caused widespread pain, they can't even tolerate paracetamol any more. Codiene sometimes makes their head pain worse. Today they tried sumatriptan for their headaches and it caused the worst pain they've ever felt, like a burning head pain.

Their private specialist said a lot of their symptoms sound mast cell related, and suggested acetyl choline to help, and methyl folate to help with medication reactivity. She's suggested also low dose ability OR valcyclovir but I need to do some more reading to see which, if either, might help. We may also try pregabalin for their pain and reducing sympathetic activity.

They're on Ketotifen which flares up their nervous system a bit but has been really helping their ME. Diazepam seems to be the only thing they don't have reactions to, along with the antihistamines they cycle for sleep.

The point being, I want to give balancing their choline/methyl folate a go but it sounds very intimidating from everything I've read here. Where is a good place to start?


Happy to list their current supplement/vitamin routine and full plethora of weird nervous system symptoms too

 

[Wishful]

I'm not sure there can be a simple guide. It's not like the body responds only one way to a change in nutrients. If you change the nutrient balance to boost methylation, which genes are you altering the rate of, since it will probably be affecting a vast number? Which genes are causing problems and which are reducing problems? What works well for one person might have the opposite effect on someone else, which you're well aware of. To me finding ME treatments is mostly a purely random process: try a change and see what happens. I think that whatever advice someone might give you has a 50% chance of being helpful ... and a 50% chance of being harmful.

We all wish for simple answers, but if you expect them, you're likely to be in for a lot of disappointment. If you think of it as random experimentation, it might be easier to accept the failures as just part of the process. Some of us do find successful treatments this way. It's a matter of luck in finding that treatment early in the process rather than later.

 

[Violeta]

After reading what you said about your partner having high adrenaline, I looked at Dr Lam's website about adrenal fatigue, he has an article about adrenal dysautonomia.

He has a supplement for it, and I thought it is very interesting that the supplement contains inositol, the other constituent besides choline of lecithin.

Here's a link to the article and the link to the supplement is at the bottom of the page.
https://www.drlamcoaching.com/blog/adrenaline-dysautonomia-known-condition/

 

[JES]

I think this forum section is probably the most comprehensive source online regarding methylation treatments in ME/CFS and also actual feedback from people. Most of the experimenting with this happened a decade ago and there seems to be less enthusiasm regarding methylation treatments now, which is no doubt because it didn't work for many of us.

The basic protocol that many of us trialed as far as I remember was simply to use active forms of B12 together with potassium. Methylfolate was a bit secondary. The main "new" thing that some of us discovered since then was that transdermal B12 oils brought additional benefits over other forms of B12.

From your treatment options I would rank low dose Abilify and pregabalin as "more likely to work" over methylation treatments and valacyclovir. I reckon I haven't heard about a severe ME/CFS patient improving greatly with methylation, but with the former two there are more success stories reported.

 

[yellowspain]

Be careful about starting the methylation cycle. I have tried it and I must have generated some type of deficiency that I cannot discover. For it to work, you mainly need vitamin B9 and B12. But many other nutrients or vitamins are involved in the cycle. I think it's difficult to find the balance to make it work.

 

[SpinachHands]

After reading what you said about your partner having high adrenaline, I looked at Dr Lam's website about adrenal fatigue, he has an article about adrenal dysautonomia.

He has a supplement for it, and I thought it is very interesting that the supplement contains inositol, the other constituent besides choline of lecithin.

Here's a link to the article and the link to the supplement is at the bottom of the page.
https://www.drlamcoaching.com/blog/adrenaline-dysautonomia-known-condition/

I've actually just purchased choline with inositol! Their specialist recommend choline but I wasn't sure which type, thank you for finding that for me!
Yes my partner has some very weird dysautonomia, flipping between parasympathetic and sympathetic extremes. When we try and calm their sympathetic symptoms it drops their BP and hr leaving them paralysed with fatigue, when we try and raise their BP it triggers sympathetic symptoms! It's tricky to balance, and hard for their Dr to figure out meds that won't push them one way or the other. At the moment we're going down more of a mast cell route. They likely do have pots but that's something we'll need to tackle once they're not bedbound and mostly immobile.

 

[SpinachHands]

Be careful about starting the methylation cycle. I have tried it and I must have generated some type of deficiency that I cannot discover. For it to work, you mainly need vitamin B9 and B12. But many other nutrients or vitamins are involved in the cycle. I think it's difficult to find the balance to make it work.

B9 is folic acid right? I ordered some methyl folate but wasn't sure if it's any better than just folic acid, but we'll give it a try and switch if it's not right

 

[emmablondevoyage]

Do you mind sharing what they have been doing that has improved their ME / CFS? thank you

 

[yellowspain]

B9 is folic acid right? I ordered some methyl folate but wasn't sure if it's any better than just folic acid, but we'll give it a try and switch if it's not right

Hello. Yes, vitamin B9 is what is known as folic acid. Many people have an MTHFR mutation, which affects the absorption of the synthetic form of vitamin B9, folic acid. That is why it is recommended to take the methylated forms, since the body absorbs them directly. In the forum and in other places on the internet you will find diverse experiences, there are those who react well or badly to the various forms of vitamin B9: folic acid, folinic acid and methylfolate.

 

[SpinachHands]

Do you mind sharing what they have been doing that has improved their ME / CFS? thank you

The main thing was getting their sleep schedule regular, cos once that goes the knock on effect messes up everything else.
Second thing is ketotifen seems to be helping. We're also trying Cromolyn soon, sticking with the mast cell stabiliser route, especially as they don't seem to tolerate any other kinds of medicine.

 

[SpinachHands]

So my partner started a Choline with Inositol supplement (containing 400mg of each) on Monday, by the afternoon they were hot, shaky, and felt like their ME was suddenly way worse. This morning they were ok but starting feeling like that again after a few hours, and after taking the supplement again it got way worse. Seems like it triggered their sympathetic nervous system and their ME somehow. Now thinking back, they normally sleep better on anticholinergic stuff, anything else they get sympathetic flare ups in the night. So piecing this together I'm wondering if their choline is already too high, and that could be causing a lot of their issues, so looking into anticholinergics now. May leave the methyl folate too until I can figure this out.

 

[Violeta]

One quick and easy thing you could try is potatoes. Potatoes are anticholinergic because of the solanine they contain. Just be sure to eat the skin, too.