Recovering from methyl folate

[breeze000]

I am looking for some guidance on recovering from taking 1-5 mg doses of methyl folate a day for about a week, which I did a year ago. Following this I experienced extreme anxiety for months that comes and goes and is somewhat creeping up again. The first few months were terrible, could not leave the house. Most notably, this triggered really annoying constant full body muscle twitching that especially reacts to eating bread. In general after eating I get weird symptoms of confusion and brain fog, that even weirder is especially apparent around sunset.

I do not think this is overmethylation. B3 (both forms) and glycine do not ease my symptoms.

In the summer I was doing a bit better so I gave up on finding a solution but this winter it has come back. I tried taking a b complex recently (two brands actually) and initially it resolved all of my problems then two days later my symptoms came back worse. I am very sure my problem lies in the delicate balance of b vitamins somewhere. B1 in any form and dose does not help (a long time ago before this problem it gave me energy) B2 more or less does nothing. B3 does not help in either form at any dose tried (up to 1gram niacinamide) B6 never tried alone, biotin significantly increases the confusion, anxiety, and brain fog, and B12 does nothing in any form. Also bloodwork shows B12 in the middle of the reference range.

Consuming large amounts of coconut water temporarily eases symptoms, something I’ve used throughout the past year. It’s obviously a temporary patch. I feel like I am deficient in something.

Furthermore, this suddenly made me permanently more constipated. It used to be half a cup of coffee in the morning and I’ll go, now I can drink 2-3 cups and maybe go a little bit.

Overall, I screwed myself bad with methyl folate and I hope to find a solution. I’ve tried so many things and even many minerals (especially those involved in methylation) with no improvement.

 

[Judee]

I don't have advice for you except to say I recently joined a heavy metal and detox group on FB and iirc they make mention of gut repair and liver detoxing before starting methylation.

I've also seen that on YT where a couple of doctors advised to get things like SIBO under control before methylating because they said some bacteria methylate too so it's just like fertilizing the bad guys.

I guess I would say at least just start on liver detox like milk thistle and or artichoke to get things moving a bit more for you in the detox pathways.

I'm sorry that happened to you. Methylation is so hard to work with and figure out and backfires on so many here unfortunately.

A lot of us also have problems with B vitamins and again my personal feeling is that it's because our toxic load makes us develop sensitivities to things like sulfur/thiols and other foods, etc. It's very common in people with ME.

Hope you can get some good advice and sort all this out soon. It sounds really difficult what you're going through.

 

[Bluebluesky]

Consuming large amounts of coconut water temporarily eases symptoms, something I’ve used throughout the past year. It’s obviously a temporary patch. I feel like I am deficient in something.

I'm curious as to what the bloodwork says about potassium? Beware that some people have symptoms in the low normal range.

If coconut water relieves your symptoms i would believe that the problem was low potassium (at least part of it) and I would keep on with coconut water and lots of potassium rich food. You may need as much as 5000 mg a day, and you may need it for your full recovery period.. That is how it was for me with b12 deficiency. And I get anxiety from low potassium. Very unpleasant, but so funny that you can make it go away by eating carrots 🥕.

In any case I wouldn't discard the fact that coconut water helps. That's your body telling you something.

 

[linusbert]

phosphorus and potassium i'd check, those are heavily drained when body comes back from slowed down metabolism. also iron could be.
imagine the body producing suddenly a lot of DNA and red blood cells. everything required for that process could be deficient now.

add some good cocoa powder, it has lots of iron and copper.

and you might do a blood check for homocystein, you manipulated methylation with folat, nobody knows whats going on now in your body. if homocystein is high you have a problem with either b12, b6, b2, folat. some kind of methylation block.
EDIT : and of course a source of methylgroups like cholin e.g. from eggs

the preferred solution to fix methylation is Glycine as it acts as a buffer, it takes and gives. B3 is not optimal because its a sponge and then the methylgroup is gone.
maybe get some good bone broth.


in general i recommend nobody with cfs to do anything high dose every day.
start with once a week and work up to at max every other day. i think the optimum would be every otherother day, like monday, thursday, sunday, wednesday, saturday and so on. but ultimately your body decides this.
this gives your body time to restore equilibrium and also you might prevent the "resistence" some experience (a good thing only working a short time and then stops).

 

[Bluebluesky]

Amen! I'll look into glycine.

 

[Jyoti]

I'm curious as to what the bloodwork says about potassium? Beware that some people have symptoms in the low normal range.

I agree. And have had a similar reaction to methylfolate, taken briefly and minimally. Constipation or slow transit can be another sign of low potassium, as can muscle twitching and tension. How is your heart rate? If that is at all elevated, another potential sign.

And if coconut water alleviates your symptoms, there is a strong suggestion that adding potassium might be addressing the issue.

My potassium levels are almost always in the normal range when I am severely symptomatic with hypokalemia, but, but as @Bluebluesky indicated--the range is for healthy people and does not necessarily provide the final word on whether you are deficient or not.

Finally--try low sodium V-8. It subs potassium chloride for sodium chloride and provides about 850 mg of potassium without the sugar in coconut water.

 

[breeze000]

I'm curious as to what the bloodwork says about potassium? Beware that some people have symptoms in the low normal range.

If coconut water relieves your symptoms i would believe that the problem was low potassium (at least part of it) and I would keep on with coconut water and lots of potassium rich food. You may need as much as 5000 mg a day, and you may need it for your full recovery period.. That is how it was for me with b12 deficiency. And I get anxiety from low potassium. Very unpleasant, but so funny that you can make it go away by eating carrots 🥕.

In any case I wouldn't discard the fact that coconut water helps. That's your body telling you something.

My potassium is always middle of the range. I know that potassium is causing the immediate effect of coconut water, but I do not think it is due to deficiency, at least not in the blood. I think the potassium issue is secondary to a more fundamental and upstream issue.

The twitching isn’t the typical low potassium twitch and is not helped by potassium. These are deep spasms across the whole body that can stick for hours.

 

[breeze000]

I agree. And have had a similar reaction to methylfolate, taken briefly and minimally. Constipation or slow transit can be another sign of low potassium, as can muscle twitching and tension. How is your heart rate? If that is at all elevated, another potential sign.

And if coconut water alleviates your symptoms, there is a strong suggestion that adding potassium might be addressing the issue.

My potassium levels are almost always in the normal range when I am severely symptomatic with hypokalemia, but, but as @Bluebluesky indicated--the range is for healthy people and does not necessarily provide the final word on whether you are deficient or not.

Finally--try low sodium V-8. It subs potassium chloride for sodium chloride and provides about 850 mg of potassium without the sugar in coconut water.

Heart rate is pretty normal. Adding potassium feels like a Bandaid. It hasn’t made any long term changes and I still struggle if I miss it. I have experienced twitching from low K before, this twitching is different and stays even after potassium. It gets worse when eating.

 

[Bluebluesky]

I think the potassium issue is secondary to a more fundamental and upstream issue.

Do you have any thoughts on what this upstream issue could be?

For the twitching, what are your thoughts and experices with magnesium? Have you looked into the b6/zinc/magnesium thing?

And have you looked into the thery of paradoxical b12 deficiency by Greg Russel-Jones? In short it says that if you are deficient in molybdenum, selenium or iodine then you won't be able to utilize the b12 that you've got.

beware: He is very specific that it has to be sodium molybdate, iodide and I think sodium selenite. I can confirm that the chelated forms of molybdenum doesn't do a thing for me, but sodium molybdate does wonders.

 

[Bluebluesky]

imagine the body producing suddenly a lot of DNA and red blood cells. everything required for that process could be deficient now.

@linusbert
Would you happen to know some kind of convincing source for this knowledge? It's gotta be what happens, but I get nowhere with explaining this to people around me, even in b12 deficiency forums.

 

[breeze000]

Does taking B12/folate deplete lithium? I was reading in all possible cofactors that can be depleted by the typical protocols on here and I lithium is one of the few I haven’t researched thoroughly, although a google search of lithium deficiency symptoms led me to consider that it’s possible. I read that along with anxiety, muscle twitching was reported in deficiency. Maybe some lithium orotate wouldn’t hurt to try?