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Methyl folate severe crash

Messages
85
Please help. I had added B12 and found that I could move up fairly quickly to taking 3 X 5000mcg a day sublingual. So I tried adding methyl folate last night 400mcg and had a weird reaction that crashed my nervous system and weakened my Parasympathetic system (digestion ground to a halt).

I got uncomfortable wheezing when I took the methyl folate and palpitations so thought it might be a potassium deficiency (?) But adding potassium didn't help.

Ididn't realise but I had already had a high folate diet. Last night I could literally feel myself vibrating in bed, so I took a bit more potassium then some high dose magnesium and glycine for sleep, but I woke up like I had six months ago with extreme sensitivity to everything.

I hadn't crashed in months, although I've been sick. I have SIBO, achlorhydria and feel like I still need to take betaine HCL, but that is really driving overstimulation in a weird kind of way.

Don't know what to do, how to fix this. I had just started being able to go to the toilet again after months of constipation.

Can't afford 23@andme yet until end of month, don't know what to do about digestion.

How long does this take to settle? Will it still settle if I'm taking betaine? I'm screwed diet wise as all I can eat is avocadoes, green beans, turkey mince. Food is still coming out undigested. Please help, don't know where to start as my head is a mess.

@Freddd? Any advice, please? Anyone please?
 

PatJ

Forum Support Assistant
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Canada
Niacin may help. See this thread for more info. According to a post in that thread Dr. Lynch recommends 50mg of niacin every few hours until symptoms subside.

And this article will help you understand the balancing act some people go through between over- and under-methylation, and how methylfolate can increase the effectiveness of some prescription medications and throw someone out of balance.

If I were in your position I would reduce (but not eliminate) the B12 dose greatly as well, for the moment. For a long period I did well with 1mg/day, now I take 500mcg/day because 1mg is a little too stimulating.
 
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PatJ

Forum Support Assistant
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Location
Canada
I should add that you may be experiencing side effects from methylfolate that aren't actually related to over-methylation. Some people even react to binders, fillers, or dyes in supplements.
 
Messages
85
Thanks, Pat. I took a lot of betaine HCL today and felt burning more like neuropathy (?) I took 1000mcg B12 and I felt like it calmed everything a bit.

The thing with the methyl folate is that mentally I feel brilliant with after the irritability and emotional liability subside. It's so frustrating, but I'll leave things as they are for now.

Thanks as well Eastman, will look into the B1. I am already taking Country life b complex but don't know well absorbed it is with my gut issues.

Just wish I understood the science of it all. Why betaine causes neuropathy when I'm nowhere near the dose I need for example.

Will look into sublingual B12 and go in crumbs. Same with methyl folate, as the mood side of it was fantastic when it settled.
 
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85
@Tuskentank

Have you ruled out vitamin B1 deficiency? A number of forum members have reported problems after taking methylation supplements that were corrected by B1 supplementation.

Dr Derrick Lonsdale sees a role for B1 in sympathetic-parasympathetic system regulation.

How Can Something As Simple As Thiamine Cause So Many Problems?
This is interesting, because I was superdosing zinc for a long time. I wonder if this has a bearing on that? Also just found black mould in my room. Will be moving out of it as I may have mycotoxins.
 
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85
If there are emotional problems, B2 may help.

Thanks, Eastman. It's more that it's distressing not knowing what is happening. I've taken a lot of betaine HCL today and it is only slightly burning my stomach, and not driving the overmethylation feeling anymore.

I've felt this way before where a big enough dose makes me otherwise feel normal, apart from the burning in my stomach. It's all very confusing. If I was taking enough betaine to digest food, then surely I wouldn't be passing undigested food?

This is such a minefield.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Try some niacinamide as suggested above.

These are biochemical processes with many variables. It is worthwhile to learn about all the cofactors which affect these processes and not just blindly add single ingredients to the mix.

15mg a day of B12 sounds like a lot... I take 10, which is the most in my doctors entire practice...

One also needs adequate B6 (P5P), B2 (R5P), methionine, magnesium and potassium for the methionine cycle. And adequate glycine, glutamine, cysteine, B1, and molybdenum.

My experience is with 10mg of B12, I need 300mg P5P, 250mg R5P, 500mg benfotiamine (B1) and reasonable amounts of everything else to be balanced.

My guess is that you had sucked all the folate out of your folate cycle and things were stuck, so when you added it the whole process speeded up dramatically and you loosened up some toxins and you then couldn't get all the way through phase 3 detox, resulting in your symptoms. Depression, anxiety, irritability can be symptoms of an imbalance, too.

A Genova Diagnostics NutrEval test would be extremely helpful. Knowing your 23andme SNPs is very useful, too, as you could have some oddball setup where the processes work a little so just than others. You also may have an infection like c. pneumoniae, a toxic load of something nasty like arsenic, or damaged mitochondrial membranes that might be affecting your situation.

You can monitor somewhat by measuring homocysteine, MCV, methylmalonic acid, FIGLU, RBC folate and magnesium, potassium, and amino acids. The HDRI methylation panel is good, too, but you need to know how to interpret it.

In any case, getting the ingredients balanced so the cycles flow smoothly is where you want to be.

Others will weigh in here, but along the way, I read Amy Yasko's Pathways to Autism, Dr. Roberts Heartfixer Methylgenetics guide, and went to Ben Lynch's classes as well as seeing his YouTube videos and reading his materials, like the Pathway Planner, in addition to working with doctors who knew what they were doing. It took patience and persistence, but now I can self-manage my complex situation.

Sounds like you're willing to learn, too, and I think it would be very worth your while.

Best wishes...

P.S. the suggestion to look into allergens or contaminants is a good one, too.
 
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Messages
85
Was able to take another 1000mcg B12 and got that crawling feeling in my legs again, but it went away. Think it was actually the sugar alcohols xylitiol in the tab. I was sensitive to those before when I fell sick initially. I know I have weak adrenals, and heard that methyl folate lowers sodium (?) so maybe pumping myself full of potassium chloride was ill advised. Need to get a balanced electrolyte mix. Already chugging salt.

I have a weird rash that cannot be explained, and am wondering if this is to do with toxic mould?

That tight wheezing feeling in my chest is weird and the palpitations as well on the lower dose B12, I'm guessing is electrolyte related or iron deficiency, given I can't digest meat(?)

Might get it checked out with a doctor.

Thanks all for your support, this is a fountain of knowledge and my best hope of recovery. God bless you all.
 
Messages
85
Try some niacinamide as suggested above.

These are biochemical processes with many variables. It is worthwhile to learn about all the cofactors which affect these processes and not just blindly add single ingredients to the mix.

15mg a day of B12 sounds like a lot... I take 10, which is the most in my doctors entire practice...

One also needs adequate B6 (P5P), B2 (R5P), methionine, magnesium and potassium for the methionine cycle. And adequate glycine, glutamine, cysteine, B1, and molybdenum.

My experience is with 10mg of B12, I need 300mg P5P, 250mg R5P, 500mg benfotiamine (B1) and reasonable amounts of everything else to be balanced.

My guess is that you had sucked all the folate out of your folate cycle and things were stuck, so when you added it the whole process speeded up dramatically and you loosened up some toxins and you then couldn't get all the way through phase 3 detox, resulting in your symptoms. Depression, anxiety, irritability can be symptoms of an imbalance, too.

A Genova Diagnostics NutrEval test would be extremely helpful. Knowing your 23andme SNPs is very useful, too, as you could have some oddball setup where the processes work a little so just than others. You also may have an infection like c. pneumoniae, a toxic load of something nasty like arsenic, or damaged mitochondrial membranes that might be affecting your situation.

You can monitor somewhat by measuring homocysteine, MCV, methylmalonic acid, FIGLU, RBC folate and magnesium, potassium, and amino acids. The HDRI methylation panel is good, too, but you need to know how to interpret it.

In any case, getting the ingredients balanced so the cycles flow smoothly is where you want to be.

Others will weigh in here, but along the way, I read Amy Yasko's Pathways to Autism, Dr. Roberts Heartfixer Methylgenetics guide, and went to Ben Lynch's classes as well as seeing his YouTube videos and reading his materials, like the Pathway Planner, in addition to working with doctors who knew what they were doing. It took patience and persistence, but now I can self-manage my complex situation.

Sounds like you're willing to learn, too, and I think it would be very worth your while.

Best wishes...

P.S. the suggestion to look into allergens or contaminants is a good one, too.

Thanks, Learner1

Sorry for the confusion, it's 1500 mcg, so 1.5mg B12, but I think you're right about the folate trap.

The toxin overload thing with methyl folate I instinctively suspected. Could be mycotoxins from the mould(?)

I take currently:

800mg magnesium citrate at night
3g glycine
Sunflower lethicin occasionally teaspoon
3g lysine occasionally
Allimed teaspoon am and pm for SIBO
Liposomal vitamin C teaspoon AM and PM
Country life B complex (To be replaced with a new b complex due to folic acid - they revved me up today though so cutting back on them)
3 X 2g taurine with meals to support phase 2 detox
Jarrows sublingual B12, down to 1000mcg twice today.

I had added P5P but reacted to it this morning.

D3 and K2 drops
Vitamin E drops

Digestive enzymes, betaine HCL and ox bile.

I'll watch those videos, thanks a million for the pointers on what else to add in too.

Think I'll be cautious for a bit until things settle. Feel a bit sick too after the second B12 dose. Feels like it's kick-starting my digestion and bowels.

It's weird but I had a clear endoscope for ulcers, etc. But it feels like there is something in my stomach that they couldn't see? With achlorhydria, could be a severe case of SIBO(?) Mycotoxins?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
I would go with folinic instead of methylfolate, which caused me a lot of overstimulation for almost a year of trying various doses. Folinic actually helps me sleep, and helps with sound sensitivity.

I would also cut way back on the B12, and see if things calm down. Folate and B12 work together...
 
Messages
366
Is the vitamin b12 you're taking methylb12? I had some bad reactions to methylb12 in the past. I tolerate hydroxob12/ hydroxocobalamin a lot better. Cobalamin needs to be converted into methylcobalamin and adenosylcobalamin, both forms are needed in the body and giving methylb12 might diminish your adenosylB12 levels. Hydroxocobalamin is a basic form that can be converted into both adenosylB12 and methylB12.

I agree with trying vitamin b2, it is a cofactor in the MTHFR enzyme and can support you folate levels. I would try it low dose and carefully though, as some people don't tolerate it well. B2 is a cofactor in the monoamineoxidase which breaks down serotonin and I got anxiety from it at times.
 
Messages
85
Thanks, dannybex and PinkPanda, I'll look into those two. I think I do okay on the B12, when things stabilise.

I tried the P5P again tonight and seemed to get on okay. Wish I knew what the palpitations and wheezing were about though. I'm guessing it's a deficiency, and I got it with the P5P as well(?)

The more I read about thiamine and it's role in stomach acid, the more intrigued I am. I think this could be key.

Folks, you are all legends, I've been through hell, and to have people recognise this illness and offer support is such a weight off.

God bless you all.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Think I'll be cautious for a bit until things settle. Feel a bit sick too after the second B12 dose. Feels like it's kick-starting my digestion and bowels.
Wise idea. Ben Lynch emphasizes starting slow with any changes.

I've repeatedly found when my system has mobilized some toxin that my bowels are very active. (This isn't a wild guess, but in situations when my doctor and I have consciously done something to increase detoxing.) Eating a high fiber diet, ensuring you have enough glycine, glutamine, and cysteine, B1, B6, and molybdenum helps the process to work.

And, if I feel like I'm really struggling, adding curcumin (Meriva) helps. Charcoal can help, too, but it needs to be taken away from everything else.
 
Messages
85
Hi Learner1,

I've ordered a liquid b1 and B2 and have the methyl B12 and P5P, just need some niacinamide.

Was reading some of the links on building co factors, so I'm going to work on that. I have a high potassium diet and use a lot of pink salt and have added calcium citramate.

I want to get to the point that I can take the methyl folate, realise taking 400mcg sublingually was a shock to my system, but in many ways it felt incredible, real glimpses of normality.

There is hope. Been a while since I could say that.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
Jarrows sublingual B12

If you're getting neurological brightening then the methylB12 is working for you, but maybe you can smooth out the side effects by trying a couple of different brands that use different fillers/binders. For oral methylB12 Freddd recommended Enzymatic Therapy as the best by far, and thought that Country Life was decent. Solgar is effective as well.

Freddd doesn't think much of hydroxy but some people do well on it, so it might be worth a try. Just keep in mind that the effects you're experiencing may be your body adjusting to finally having the B12 that it needs. I've tried hydroxyB12 but didn't feel good at all. When I returned to methlyB12 I felt much better, despite the fact that one expert recommends hydroxy based on my genetics.

For undigested food, you might need more betaine (I had to work up to it as my stomach lining thickened to handle more acid) but you might also need more (or better quality, or wider spectrum) digestive enzymes.
 
Messages
85
If you're getting neurological brightening then the methylB12 is working for you, but maybe you can smooth out the side effects by trying a couple of different brands that use different fillers/binders. For oral methylB12 Freddd recommended Enzymatic Therapy as the best by far, and thought that Country Life was decent. Solgar is effective as well.

Freddd doesn't think much of hydroxy but some people do well on it, so it might be worth a try. Just keep in mind that the effects you're experiencing may be your body adjusting to finally having the B12 that it needs. I've tried hydroxyB12 but didn't feel good at all. When I returned to methlyB12 I felt much better, despite the fact that one expert recommends hydroxy based on my genetics.

For undigested food, you might need more betaine (I had to work up to it as my stomach lining thickened to handle more acid) but you might also need more (or better quality, or wider spectrum) digestive enzymes.
Thanks again, Pat.

I think the B12 is mobilising mercury, I get a tight band in my forehead, and started to burn like neuropathy (?) when I took an extra one today (then spat it out).

Problem with betaine is it seems to push me into acidosis very easily.

The B12 now causes that wheezing and palpitations every time(?) But still the brightening other than that. Think I'll cut down to 500mcg at a time from tomorrow

I suspect it is a detox thing because I have to go to the toilet every time I take it now.
 
Messages
85
On the other hand, I took some potassium chloride tonight and the head tightness went away. I felt great for around half an hour then nausea set in. I took some pink salt and that eased the nausea. Looks like my body is struggling to balance electrolytes. Cripes this is hard to figure out.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I think you're on the right track. Work backwards, getting elimination working - sauna, fiber, water, binders, then transsulfuration, then glutathione synthesis and recycling, then methionine cycle, then folate cycle.

It would be worth having some expertise helping you tackle mercury. DMSA and DMPS are helpful once you get your pathways working, then monitor kidney and liver function as you progress.

Also, regarding what worked for Freddd, it was my understanding that he has an oddball genetic setup, so what worked well for him may not work for everyone else.