Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Started Methylation with B12 only – Neuropathy is much worse

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Kontra, Feb 26, 2014.

  1. Kontra

    Kontra

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    Hi all,

    I’ve been dealing with a number of issues for a number of years, pretty much bread and butter symptoms for this forum – hypolglycemia, chronic fatigue, dizziness, multiple chemical sensitivity, IBS and about 40 others. The most significant however which is most severe is neuropathy, which has been progressing very rapidly in about 9 months. During and before that time my blood sugar has been under good control and I’m not diabetic. Diet is very healthy, lots of meats and no issues with gluten.

    Not much I’ve tried has helped, and I’ve always known there is a liver component to my illness especially due to having MCS and occasional liver ‘aches’ and high enzymes. One thing I hadn’t tried was methylation, due to being extremely to supplements and not being able to tolerate any detox.

    I decided to add B12, ¼ of a 1mg tablet every other day starting 3 weeks ago. I take it sublingually typically in the morning under the tongue. It did and still does ‘buzz’ me a little but It’s not effecting my sleep so I’m holding at this dose. I can feel my sensitivity to chemicals has increased which suggests to me that methylation has been ‘switch on’. I’ve not even thoughts about the co-factors yet as I’m so sensitive.

    Unfortunately my neuropathy has been getting worse. I’m almost unable to type due to the numbness and cramping in my fingers. I can still walk but the numbness and tingling has been much stronger. I’ve read lots of posts and would expect some side effects to starting methylation, but on the neuropathy side of things I’ve not read that numbness can get worse. When people have neuropathy from B12 deficiency which is then replaced, often they go through pain and burning as the nerves ‘awaken’. This is not happening to me, and the opposite seems to be happening.

    Did anyone experience anything similar when starting methylation? The obvious recommendation in the short term is to stop the B12, but this will never get me anywhere with my health I feel.



    Many thanks,
     
  2. adreno

    adreno PR activist

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    You need to take methylfolate with your B12. Try 200-400 mcg for starters.
     
    Critterina likes this.
  3. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    That cramping sounds like you need some magnesium and/or potassium.
     
  4. andocobo

    andocobo

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    Hi Kontra,
    I know this post is a few years old now - I hope your health hasn't worsened significantly in that time. I've had similar experiences with B12, it made my neuropathy, cramping and many other symptoms worse. I have issues with s-adenosylhomocysteine (SAH), very high levels of SAH and very low, virtually absent homocysteine. This is probably due to some kind of problem around the SAHH enzyme or something downstream from it (adenosine etc.). Anyway, for me I think taking B12 put more pressure on this enzyme which resulted in a worsening of my symptoms.

    What I did find to help somewhat was supplementing with creatine, phosphatidylcholine (PC) and n-acetyl cysteine. Creatine and PC are 2 of the main products of the reactions involving the methylation of SAMe to SAH using the SAHH enzyme and cysteine is created from homocysteine. I think these supplements have taken some pressure off my methylation cycle and have helped me a bit.

    Of course, these may not help you at all. Before trying any other supplements I'd recommend getting a methylation profile done to see if you have problems there / what they are.

    Hope you're doing well ;)
     

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