The 12th Invest in ME Research Conference June, 2017, Part 2
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Can oral B12 cause or worsen tingling or other nerve problems? !

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by UsableThought, Feb 28, 2013.

  1. UsableThought

    UsableThought

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    I've posted here before about whether to get the 23andMe test. I have in fact ordered the test & given my spit, so now I'm in the period of waiting 6 to 8 weeks before I get the results. This is after learning from the more readily available MTHFR test that I don't have either of the two most common gene mutations for metabolizing folate.

    Meanwhile I have a real problem with tingling in my hands and feet, and I'm wondering if the oral B12 I started taking about a month ago might be making it worse.

    As background, in 2007 I began experiencing pins-and-needles and tingling in my feet. An MRI and a nerve conduction study concluded that I have some spinal stenosis that is causing some compression in the nerve roots in my lumbar spine, thus causing a sort of static in the nerves. So the problem isn't really in my feet but in my back.

    Off and on in the years since, I've had episodes where sitting makes my symptoms worse. In November I started experiencing another such episode, which has gradually gotten worse. Right now, sitting is very difficult for me because the tingling gets worse even if I sit only a few minutes. And in the last couple of weeks the tingling has gotten worse in general, too - it's now more like burning than just tingling at this point.

    Worse yet, in the last few days I've noticed that the thumbs & forefingers of both hands are tingly too. As someone who's had fibromyalgia for 20-plus years, I'm familiar with tingling in my hands as something that comes and goes for no discernable cause . . . but now I'm thinking that I may have stenosis in my neck, too, with nerve compression showing up in my hands. So this new tingling may wind up being permanent.

    I'm going to talk to my doctor tomorrow about getting an updated MRI of both my back and neck to see what that shows. My other worry is that maybe I'm developing something systemic, like slow progressive MS.

    But what I want to ask is, could the large amount of oral B12 I'm taking be making things worse rather than better? I started it on Jan. 28, so that's about a month ago. I take 2,000 mcg of methyl-B12 (the Jarrow brand) and 5,000 mcg of dibencozide (the Source Naturals brand) each morning. Is that too much? I have read posts here that suggest taking small amounts, but usually that is only for people who find they react strongly to even small amounts of B12. I've never noticed an immediate reaction of any sort.

    I also take 800 mcg of the Soglar methylfolate per day, plus some other stuff like D3, magnesium, etc. None of this seems like it should have any influence.

    Probably the B12 isn't related at all to my symptoms . . . but if anyone sees a link or can suggest anything else for me to consider, I'd appreciate it.
     
  2. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    http://www.livestrong.com/article/451351-vitamin-b12-toxicity-level/

    http://en.wikipedia.org/wiki/Vitamin_B12 Adverse effects... Interactions...

    http://vitamins.lovetoknow.com/Side_Effects_of_Too_Much_Vitamin_B12

    I experienced some adverse effects that involved my eyes.
    I seemed to become intolerant of B12 supplementation after awhile, such that I could not even tolerate minute amounts, in any form, even in small doses. Not sure if a toxicity effect, intolerance effect or allergy to cobalt effect, or both.

    If you have such sensitivity to it, consider whether you may have an underlying genetic connective tissue disorder like Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome etc.
     
  3. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Usablethought,

    Jarrow methylb12 is now inferior. It changed about a year ago. So if you were to try Enzyamtic Therapy b12 infusion, you could get a better idea of what is going on. This is close to 100% probability of being different from the Jarrow.

    The scary idea is that you could be getting Subacute combined degeneration. Mine continued worsening until I got to sufficienctly large doses of MeCbl of sufficient quality to reverse it. That can casue all sorts of neurological and mood and personality difficulties. Currently I'm taking 30-50mg a day of Enzy to keep my SACD in substantial remission. I'm never more than about 3-6 months away froma wheelchair.
     
  4. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Czechosherlockia, USA
    Hi, you might want to expend 10 minutes on this just for the heck of it:


    A doc in FL uses perispinal injection of anti-TNF drug Enbrel.
     
  5. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Merylg,

    I read those articles and I saw what they were callinf side effects of b12. For intance hpokalemia can be caused if thye b12 is actually effective. The neuroptathinc tingling is a becoming aware of already present damage as b12 activates the nerves. This is an early step in healing. There are a lot of common things that often mean that effectgivenes is happening.

    The extreme most extreme responses to b12s I have seen are in those mosr severely deficient that lack of b12 is the cause for all sorts of problems. And another clue to healing is all the syntpoms feel more intense, sensory and mood neurology all kinds of wakes up. If some of it is perhaps damaged or in process, then some extreme mood and personality changes are demnonstrated. MeCbl and AdoCbl and HyCbl are not known to be toxic at any dose. It is not a reaction to cobalt any more than drowning in water is caused by chlorine poisioning or sodium metal burning through ones body.

    Can you desribe the effects in your eyes and elsewhere and what kind and how much of it you were taking and what else like folates?
     
  6. Freddd

    Freddd Senior Member

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    Salt Lake City
    Hi Sherlock,

    Sounds like some nasty pain and some nasty side effects possible. Makes me glad I haven't had that kind of problem sincne 1978. And it was a disk problem. One article suggest cannabis might be effective for simlar reasons.
     
  7. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    Hi Freddd,
    Thanks for your reply. Basically I did rich's Simplified Methylation Protocol for about 6 mths (with some degree of improvement), then progressed to try your protocol, including the two challenges of higher amounts of MeCbl and AdoCbl. Some points:
    1. I experienced a lot of overnight dehydration & always sensed that I was most intolerant of MethylCbl & Methylfolate
    2. I monitored serum potassium a couple of times & it was OK
    3. I was not prepared to swallow large amounts of potassium, but did at times take some (Potassium Gluconate 99mg NOW brand)
    4. My onset of Dry Eye was gradual
    5. My eye event that felt vascular, was sudden, but perhaps pressure was building before it happened. It may have been solely due to Gabapentin 100mg/day which I had been trialling for about 2 weeks (prescribed by Rheumy)
    6. Felt a popping at back of both eyes, pressure at back of both eyes & pressure inside eyeballs. Visible shrinkage of eyeballs & being able to feel that they were small. Eyelids stuck shut & stuck to surface of eyes.
    7. After that one-off event, I continued to have Dry Eye & often shrunken eyeballs with an appearance of forward & reverse ptosis. Pressures measured OK by optometrist (10). Lipid layer missing from tear film. Fish OIl helps. Lubricating drops help.
    8. Stopped Gabapentin & all supplements to review
    9. My 23andMe results put me at higher risk of exfoliation Glaucoma, so perhaps my event reflected this??? One opthalmologist diagnosed Dry Eye....o_O which did not enlighten me at all! I'm seeing a Mitochondrial Prof now whose workup includes another visit to a different teaching hosp. opthalmologist. Maybe they will have some new ideas.
    10. Brands I was taking: Jarrow Methyl B-12 5000 mcg
    Source Naturals Dibencozide coenzymated 10 mg (Also used Country Life AdoB12 first)
    Solgar Metafolin 800 mcg (L-methylfolate)
    (Plus all supporting supplements)
    11. Built up high levels in blood of serum B12, serum folate & red cell folate. Took >6 mths for these levels to return down to reference range. I know these levels don't necessarily reflect functionally what is going on, but I thought red cell folate might?????????
    12. Being investigated for genetic mitochondrial disease, genetic connective tissue disorder, plus ?FMF ?Behcet's ?Amyloidosis ?Lupus ?PsA ?Crohn's, ?UC. Have sero-negative spondyloarthropathy, MCS, FM & profound fatigue. Have NASH (fatty liver)/mild insulin resistance. Cognitive issues.
     

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