Neuropathy is growing, need help

[HurrySaveMe]

A couple of weeks ago I started taking methylfolate 1000 mcg, I was on it for two weeks and during that time I started getting depressed, anxious, confused, etc. I clearly didn't do enough research and found out that taking methylfolate alone can cause methyl trapping. I then stopped the methylfolate, waited a couple of days, then started taking a B-complex that contains both methylfolate (800 mcg) and methylcobalamin (200 mcg), it also has B1 (62 mg), B2 (50 mg), B6 (24 mg) and niacin (100 mg).

At first, this completely reversed my symptoms that I got from taking the methylfolate alone, but quickly afterwards I started getting neuropathy type of symptoms, my arms and legs feel like they're burning. My eyes burn and my vision is getting blurry, my fingertips have gotten pruney too.

Did I induce a methyl trap/overmethylation?

I'm Heterozygous for MTR and MTRR, and Homozygous for CBS (C699T) and COMT (rs4680) My MTHFR is fine.
My blood levels: Serum B12 was high, homocysteine was normal-high, and folate was normal-low.

I'm going to try a very low dose of sublingual methylcobalamin (125 mcg), to see if that can help. If not, then I don't know what to do.

 

[Wolfcub]

So sorry you are going through this @Joakim . I wish I could be more helpful to you, but there will no doubt be other replies here which may help. I hope so.

I am so unsure of the methylation thing -for myself. I responded rather badly last year (after improvement for 4 or so days!) to a high dose B complex.

Then a very dear friend bought me some excellent quality methylcobalamin (B12) 1000mcg to see if it would help. I took 1000 for a few days then went down to 500 -noted nothing bad, and nothing good.
I took it with a general lowish-dose B-complex. And eating foods with B vitamins.

Hard to tell if it's hurting or helping. I feel no different (better/worse) for taking it but am not sure. My "crashes" are more frequent recently than they were before taking it, and during the winter, but that might be coincidental as they are unpredictable anyway

I have had no specific lab reports about it, as you have. All I get from my doctor/test results is that I am "definitely not deficient in B12"....


Whew! I hope you find out something that will help you. Methylation is so hard for me to understand. Please forgive me for not being more helpful.

 

[MTpockets]

I can't take a b complex. I have to have everything separate so I can leave out certain vitamins and tweak the doses of each one. I have to take considerably more b12 than folate. Also you might need to take some extra potassium for a while as methylation can use it up fairly quickly.

 

[prioris]

You may mean your over methylated not methyl trapped. I can't touch anything with methylation since I am over methylated already. look for non methylated vitamin B stuff.

 

[Stretched]

A couple of weeks ago I started taking methylfolate 1000 mcg, I was on it for two weeks and during that time I started getting depressed, anxious, confused, etc. I clearly didn't do enough research and found out that taking methylfolate alone can cause methyl trapping. I then stopped the methylfolate, waited a couple of days, then started taking a B-complex that contains both methylfolate (800 mcg) and methylcobalamin (200 mcg), it also has B1 (62 mg), B2 (50 mg), B6 (24 mg) and niacin (100 mg).

At first, this completely reversed my symptoms that I got from taking the methylfolate alone, but quickly afterwards I started getting neuropathy type of symptoms, my arms and legs feel like they're burning. My eyes burn and my vision is getting blurry, my fingertips have gotten pruney too.

Did I induce a methyl trap/overmethylation?

I'm Heterozygous for MTR and MTRR, and Homozygous for CBS (C699T) and COMT (rs4680) My MTHFR is fine.
My blood levels: Serum B12 was high, homocysteine was normal-high, and folate was normal-low.

I'm going to try a very low dose of sublingual methylcobalamin (125 mcg), to see if that can help. If not, then I don't know what to do.

I don’t know about your methyl concerns but here’s a related protocol for peripheral neuropathy, i.e. neuropathy in feet: B12, Magnesium, Fish oil and Evening Primrose oil, B complex, Benfotiamine (B1 soluble in lipid). I found this in the HealthUnlocked.com forum in January, 2019, and adopted it for personal use before rxs. Since then I’ve gotten opiate rxs from neurologist but continue to take the supplements. It’s impossible to determine their contribution to amount of pain relief but since pain has diminished I’ll continue with them... . You might want to look into them for trial.

 

[Eastman]

The vitamins B1, B6 and B12/methylcobalamin are among the nutrients often prescribed for neuropathy.

Efficacy of combination of vitamin B1, B6 and B12 in management of diabetic peripheral neuropathy

Other nutrients have also been linked to neuropathy.

Nutritional Neuropathies

While vitamin B6 is sometimes recommended for neuropathy, high doses of B6 supplementation have also been linked to neuropathy.

[How much vitamin B6 is toxic?]

Some discussions on Phoenix Rising on problems experienced after supplementing B6 can be found here, here and here.

The toxicity of B6 may be limited to the pyridoxine form only though. Active forms like pyridoxal-5'-phosphate may be safer.

The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function.

 

[PatJ]

quickly afterwards I started getting neuropathy type of symptoms, my arms and legs feel like they're burning.

One of Freddd's posts described this effect. He thought it happened because the nerves were starting to heal now that they were getting the nutrients, especially B12, that they needed.

 

[Remi]

The Pat Kornic protocol I'm following for b12 says 10 mg b6 per day is max. Also, to supplement b complex 4 months, then skip 2 months, etc. If you ever had b6 toxicity, they advise against ever supplementing with b6 again.

I got my b6 up from just deficient to high normal in 2 months with 10 mg a day in Holland Barrett B Complex. (After waisting 6 months with Flinndal, which got me from low normal to deficient. 🙄) Am now taking a break. Thorne Basic B Complex has 10 mg as well, but it gave me intestinal trouble.

Some people in her group don't tolerate folate very well and take folic acid, and vice versa. I think Thorne has folate and Holland Barrett has folic acid.

 

[pogoman]

Might be taking too much B6 possibly?
Excess levels can cause neuro issues.
Also just found this about folate, I'll have to find out if its the same one in my sig.

https://now.tufts.edu/news-releases...-damage-risk-older-adults-common-gene-variant