Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
This is pretty esoteric, but lately my symptoms have all been, like -- ataxia. Not ataxia where I'm staggering around but this weird thing where my trunk and neck kind of miss the signal to stop moving. It's subtle -- no one can apparently tell that it's happening even when I demonstrate this and when they do see it they say it looks like I'm doing it on purpose.
It is so weird and it drives me batty.
Anyway today I remembered reading something about how spine/neuro problems were sometimes caused by a B12 deficiency. I am NOT deficient in B12, in fact the doctor told me to stop taking it since my level was really really high from all the supplementing I was doing.
But today when it started I popped a methylb12 cap and it felt like it staved off the worst of this bobbing ataxia thing. It could have just been a coincidence; I have to try it again tomorrow.
So I'm wondering, is there anything anyone's ever read about B12 resistance? Like you've got enough in your liver but your body can't use it somehow?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I don't know a whole lot about this, but I had some genetic testing through a doc that says you have to look at the whole gene picture before deciding what kind of b12 to give a patient. MTHFR doesn't always call for methyl b12 according to him.
I have a double copy of the MTHFR mutation, but after taking the rest of my genetics into account he recommended hydroxocobalamin. I'm trying it and it actually seems to be helping more than the methyl b12.
Not sure how or why, but that's my current experience anyway.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I'm a double too. It's kind of weird how well Bactrim has always worked for me when it stops folate synthesis, which is what I'm supposed to not be able to make very well.
Very interesting though. Genetic testing...ugh. I wonder if I can just donate my body to science now and get some kind of discount.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Yes! I've wondered the same thing about Bactrim.
I've started a few of the recommended supplements based on my genes and they really seem to be making a significant difference. Too early to say much though.
You don't have to donate your body for the genetic testing, just a little saliva. (: You can do it from the comfort of your own couch for $300. If you've already done 23andme, that knocks it down to just $99.
Posts: 748 | From Texas | Registered: Feb 2015
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ukcarry
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Member # 18147
The amount of B12 shown in the usual blood test does not differentiate between active and inactive B12. You are right that some is used only by the liver and is recycled. B12 has to be bound to proteins that act as transporters in order to get to where it is needed and be used by the body.
The usual serum B12 test is therefore not very helpful. I was showing strong deficiency symptoms, yet my serum levels have always been high. There is a test for active B12 available via St Thomas's Hospital in UK, but I am not sure about the USA.
The urinary levels of MMA (methylmalonic acid) are regarded by many as a better guide to active B12 (high levels MMA may indicate low levels B12).
Physicians often do not seem to understand that the usual tests are pretty useless, perhaps because, in UK at least, so little time during medical training s spent on vitamins, minerals etc (half a day apparently over here).
If you supplement, the type of supplementation is important and oral B12 is not usually considered to be the most efficient or effective.. I find the topical B12 oils from a small company in Australia very good and mainly use one that is a mix of methyl and adenosyl cobalamin, but there are several different oils available (no financial connection with the company!).
If you know your genetic profile, Amy Yasko has a guide chart to which type of cobalamin might suit you best.
Posts: 1647 | From UK | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks guys -- I knew I had read something about this at some point. There's something about *high* B12 levels that's a red flag for something but I don't remember where I read about it. Something about how you might have it but you're not using it.
I think it correlates with autoimmunity somehow.
I've got methylguard. Gonna try it again today and see Posts: 2057 | From Florida | Registered: Feb 2015
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