The FIRST time I tried a B12 supplement in any form:

  • I had NO reaction.

    Votes: 83 47.4%
  • I had a POSITIVE reaction that lasted for more than two days.

    Votes: 50 28.6%
  • I had a NEGATIVE reaction that lasted for more than two days.

    Votes: 23 13.1%
  • Other (feel free to explain in a post)

    Votes: 19 10.9%

  • Total voters
    175
Messages
8
Sorry to hear about your vitamin B roller coaster ride! I think many people here can relate.

Did your functional medicine doc ever ask you to take folate or methyl-folate? It seems rather unusual for someone who knows a lot about methylation to advise taking B12 and B6/P5P, but not folate...

So the plan was that I was to start 250mg methyl-folate 2x per week 3 weeks after I had started the others but there was a delay in delivery and I received the methyl-folate the same day I decided I needed to stop all Bs. I took a dose of methyl-folate that morning and after talking to my husband that afternoon about all the strange symptoms I'd been having decided to stop the Bs. She based this protocol on my genetic profile, my labs over the last year, and my symptoms. I am taking other supplements as well and I'm awaiting the results of an extensive stool test and Magnesium labs.
 

Wishful

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I had positive results but then I started having emotional outbursts

It was amazing just how strongly suicidal niacin could make me. If I'd had a convenient method of suicide after taking a niacin tablet, I probably wouldn't be typing now. Tryptophan also made my suicidal moods stronger, so my theory is that the moods were influenced by kynurenines, out of balance due to ME. If I was low in dietary niacin, my cells would metabolize quinolinic acid (neurotoxic kynurenine, linked to suicidal moods) into niacin; with dietary niacin, that evil QUIN would remain in my brain cells, doing its nastiness.

My experience is that if something, such as B vitamins, causes bad symptoms, stop taking them despite what some ignorant (about ME) expert's theory says about their beneficial effects for healthy people.
 
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8
My experience is that if something, such as B vitamins, causes bad symptoms, stop taking them despite what some ignorant (about ME) expert's theory says about their beneficial effects for healthy people.

My doc recommended for me to pull way back (like 1-2/month for b12 and 1x per week for niacin - and nothing until results are back for p5p and methyl-folate) and ordered zinc and copper testing along w/ RBC Mag test which I am going to do today. I told her I was not going to take anything until those results came back and maybe not after that. I believe this doc understands that she's my guide but I'm the one in the driver's seat.
 

Mary

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Seems like an odd question maybe, but, do people that use b12 supplements get highly raised b12 blood labs? I red that should not be the case and raised b12 in blood can be a sign of malignancy?
I think it's very common for people who take B12 supplements to get high blood labs - this doesn't indicate malignancy, but, rather a problem with getting the B12 into cells. So the high serum B12 levels are pretty meaningless. My serum B12 levels were always very high but on hair analysis my B12 was just about undetectable. I think it's like many other nutrients with ME/CFS - they have a hard time getting into the cells, which I think is why I have to take high doses of so many things, including most of the B's.
 

Mary

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@Pyrrhus - the very first time I tried a B12 supplement was when I was in my 20's and healthy - and I had a noticeable reaction (positive) within a short period of time - maybe an hour?, a little boost in energy. I have no idea if this lasted into the next day.

When my health started going south some years later, but before I started crashing in 1998, my doctor had me do methylcobalamin injections 3 x a week, 5000 mcg. each, and I noticed no difference in how I felt. B12 levels on hair analysis were always undetectable.

After several years of injections, and then sublingual tablets and then injections and then sublingual again, I tried liquid methylcobalamin (maybe 6 years ago? can't remember) and when I used the liquid methylcobalamin 5000 mcg. 2 x a day, sublingually, I finally could feel a difference. So I think the injections weren't enough - they might have worked if I had done them daily, and possibly 2 x daily. I'm currently doing about 2500 mcg. 2 x a day - I no longer need the 5000 mcg 2 x a day.
 
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I dissolved one Jarrow methyb12 tablet https://www.jarrow.de/en/vitamins/31-vitamin-b-trio-42601732912.html in water, after a few small sips, I got a strong reaction which included an intense migraine with swirling visuals, increased nerve pain in arms, increased derealization/depersonalisation, increased anxiety, and a novel muscle weakness feeling. The next day I dissolved the entire tablet sublingually with no reaction. I have ordered Enzymatic Therapies methylb12 to try because I had read Freddd say that Jarrow had gone bad.
 

Wolfcub

Senior Member
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I just saw that I have the Jarrow methylB12 1000. I didn't know about what Freddd had said about it.

I actually noticed nothing from it. No ill effects but no benefits either. I don't take it daily and sometimes lapse taking it. I usually bite the tablet in half, so I take 500, and wrap half in a piece of tinfoil for next time.
I am more likely to take it whenever there have been any dietary restrictions of any kind, along with a B complex, and sometimes B2 12mg.
With the B2 I noticed remarkable effects...that petered out after a week or two.
With B12 I noticed absolutely zilch.
 

Wolfcub

Senior Member
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when I used the liquid methylcobalamin 5000 mcg. 2 x a day, sublingually, I finally could feel a difference. So I think the injections weren't enough - they might have worked if I had done them daily, and possibly 2 x daily. I'm currently doing about 2500 mcg. 2 x a day - I no longer need the 5000 mcg 2 x a day.
Ah!! :bulb: With that in mind, my 500mcg is a tiny amount!
 

xebex

Senior Member
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840
In the poll why does the negative reaction have to last more than 2 days?

When I first tried it I had a horrendous reaction like I had been poisoned, it lasted about 4 hours and was so bad I thought I’d have to go to the ER but luckily it started to wear off and I was ok by the next day.
 
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Wolfcub

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Why does the negative reaction have to last more than 2 days? When I first tried it I had a horrendous reaction like I had been poisoned, it lasted about 4 hours and was so bad I thought I’d have to go to the ER but luckily it started to wear off and I was ok by the next day.
Gosh, that's rotten @xebex I have no idea why some people have a terrible reaction, and others, like @Mary cope well with, and seem to need large doses.
 

Mary

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Why does the negative reaction have to last more than 2 days? When I first tried it I had a horrendous reaction like I had been poisoned, it lasted about 4 hours and was so bad I thought I’d have to go to the ER but luckily it started to wear off and I was ok by the next day.
If someone is deficient in B12 (or folate, and some other nutrients) it can cause potassium levels to tank, often badly, which can wipe you out. I'm wondering if something like this happened to you? However, I know there can be a lot of other issues relating to methylation, including various genetic SNPs - we can all be very different here!
 

Paralee

Senior Member
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I never felt a cyanocobalamin shot or supplement. Turned out I'm a non-secreter and some of us have to do the injections. The hydroxycobalaman hit the spot. Sorry for the spelling errors.
I can't figure out what kind of test would be the equivalent of the mma with the B12 for folate. A regular blood test shows me way over folate levels without any supplementation.
 

Learner1

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I never felt a cyanocobalamin shot or supplement. Turned out I'm a non-secreter and some of us have to do the injections. The hydroxycobalaman hit the spot. Sorry for the spelling errors.
I can't figure out what kind of test would be the equivalent of the mma with the B12 for folate. A regular blood test shows me way over folate levels without any supplementation.
Ideally. You'd want to test methylmalonic acid, homocysteine, MCV (on a CBC), B6, and RBC folate.

Folatr tests are not very good, but you can figure it out by process of elimination. Homocysteine is elevated if any of B6, B12, or folate are low. But which one(s)? MCV is high (,over 94) if either folate or B12. Is low.

MMA is the "gold standard test" for B12, not serum B12. If it's high, B12 is low. If you test V6 and find it ok, along with normal MMA, you have a folate problem.

Hydroxocobalamin and methylcobalamin are not the same - methylcobalamin has methyl groups.
 

xebex

Senior Member
Messages
840
If someone is deficient in B12 (or folate, and some other nutrients) it can cause potassium levels to tank, often badly, which can wipe you out. I'm wondering if something like this happened to you? However, I know there can be a lot of other issues relating to methylation, including various genetic SNPs - we can all be very different here!

interesting, it was more than wiped out, I felt like my brain was splitting in two and I was going to have some kind of psychotic episode (though I didn’t) I also felt so poisoned, like a really bad hangover which could be a potassium thing I guess. I am homozygous for COMT (slow) so I think it’s actually suggested I don’t take methylated versions of b vits, it wasn’t methyl b though so I have no idea what was going on. I have lots of problems with B vits but b6 seems ok, not sure if that gives any clues.
 

percyval577

nucleus caudatus et al
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With the methylation though there might be something. I will look again in autumn, when NO might be in my body lower (my impression only). I say this because I have good effects from acetate (very small dose), and acetylation is known to take place e.g. in epigentics, as B12 methylation is.

I think an influence on epigentics is not in itself necessary useful, but may easily depend on good circumstances, so I wonder why in the past the B12 thing has been considered that helpful, but didn´t read through the theory.
I did, BTW, and B12 has a good effect this year. I think nevertheless that methylation is not the reason. The effect comes promptly and the intake is easily overdone.

Inhibitory stuff that can work for me are: Cl and K (both have just stop to work on a wider scale); acetate (this now not in this autumn, though in the last one, which might be an argument against methylation as there is an acetylation as well), B12, and Vitamin C

Citrate works in the same felt manner, but it has been shown rather to elevate nitric oxide (via oxalacetate).


I think that all this stuff works preferably in different section of some brain structures, and for geometrical reasons, there could be a sequence to take them, and an optimal amount. I think now it could be: B12 - Cl - Citrate - Acetate (these lst ones have been the start in the year before). Potassium is extra, on its own.
 
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8
interesting, it was more than wiped out, I felt like my brain was splitting in two and I was going to have some kind of psychotic episode (though I didn’t) I also felt so poisoned, like a really bad hangover which could be a potassium thing I guess. I am homozygous for COMT (slow) so I think it’s actually suggested I don’t take methylated versions of b vits, it wasn’t methyl b though so I have no idea what was going on. I have lots of problems with B vits but b6 seems ok, not sure if that gives any clues.

This is the reaction I've had to b12. Both to methylcobalamin and andeo. My reactions do not happen immediately. It's terrifying. Felt like I was losing my mind. I'm heterozygous for COMT V159M and H62H.

 

godlovesatrier

Senior Member
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I did b12 injections. Didn't really do much. I'm high as a kite if I take b12 orally. Even transdermally I'm fairly wired. By sq injection it usually had no effect. I took 1mg a day for about a month. Didn't really notice any changes at all. Of course this is about getting the right b12. But my transdermal b12 is the right form and that doesn't so a whole amount for me. Perks me up but symptoms persist underneath.
 
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