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Need some expert advice :(

Dlonelyguy profile image
5 Replies

Hi Everybody,

It has been a while since I posted here but my symptoms have actually become worse on methyl B12 which is very strange with by b12 levels at 1000 + . My balance/cognitive functions have deteriorated since I received methylcobal injections (which was around 2 months ago) and I am currently supplementing with Jarrows 5000 mcg b12, 2 times a day. Finally today I urged my GP in India to send my folic acid report which I dont think he ever saw. It listed my folic acid level as 23.4 while the range is <5.38 ng/ml which is atrocious as i stopped folic acid supplementation 3 months ago and have only supplemented for around 2 months in my entire life! Could this point to the fact that my body might not be be able to process the available folic acid to folate which is actually resulting in worsening of b12 symptoms? Does methylcobalamin actually require folate to alleviate the symptoms? Sorry but my GP in india urged me to stop supplementing with folic acid and hence the question. What happens if I start on Jarrows methylfolate again? Will it actually do more harm than good? Apologies for the naive questions but I am really intrigued by how can supplementation have a detrimental effect. I am also thinking of getting tested for MTHFR. I was also researching on methylation protocol and could that be anyway related to cognitive decline/memory issues? I am pretty sure there are a lot of folks on this forum who might be having the same issue. Any pointers would be much appreciated.

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Dlonelyguy
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Gambit62 profile image
Gambit62Administrator

There are some genetic variations (COMT gene) that mean that for some people methylated forms can push the process that recycles neurotransmitters into overdrive - whereas it really needs to be in a delicate balance - you might be better trying an unmethylated form of B12.

Could you try for an unmethylated form? and see if that works better.

patez profile image
patez in reply to Gambit62

Hi.

I experienced similar problems with Methyl cobalamin lozenges. They made my symptoms worse, and I had added side effects of cracked lips and very dry mouth.

I then found some Neurorubine Forte tablets (Cyano cobalamin), which did seem to help. I then later found a local source of Neurobion 3 ml injections (which I have to self inject), which were also Cyano. My symptoms started to melt away very quickly.

I recall that either fbirder or Gambit62 mentioned this to me, that different people may react differently to any of the 4 forms of B12 and to experiment if one form does not seem to be helping.

I am not an expert by any means, so this is only for info and passing on my own personal experiences.

Methyl made my symptoms worse, but Cyano suited me very well. In fact, I have been amazed at the improvement since starting daily IM 2 weeks ago. Chest pains have gone, tingling fingers have nearly gone, I feel a lot more alert, my balance problem is definitely greatly improved, and I am not anywhere near as fatigued as I used to be.

There is a side effect that I am suffering from, with the Cyano injections, and that is blurred vision in the right eye, which seems to come on about 2-3 hours of the injection, and lasts for 2-3 hours?

But the benefits of the Cyano treatment are well worth that minor side effect!

Hope you find a solution and get well soon.

Tez

fbirder profile image
fbirder

Taking methylfolate isn't going to do any harm if you take a proper dose (no more than 800 ug a day). If you do have a problem converting folic acid to methylfolate then it will probably help.

I really didn't like methylfolate - I ended up giving it away.

Dlonelyguy profile image
Dlonelyguy

Thanks a ton gambit, fbirder and patez. But does b12 actually require only methyl folate to start the repair work? Or is folic acid good too? Also how do I get the excess folic acid out of my system?

pvanderaa profile image
pvanderaa

Cyanocobalamin and hydroxocobalamin are analogue forms that get converted into the active forms of methylcobalamin and adenosylcobalin.

You may need more adenosyl and are not getting it / or making it harder for your body to convert it from the methyl-b12.

Folic acid works well for me. You also need a daily multivitamin to provide the minerals and metals that support metabolism.

Google "methionine loop" and look in the images tab for a diagram that looks like two circles side-by-side. B12 sits at the intersection of the two circles.

Folate is the circle to the left and methionine is the circle to the right.

This will give you a picture of how the various vitamins flow in the metabolic process,

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