Problems in the methylation cycle, are these affecting you?

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 21, 2006.

  1. tansy

    tansy New Member

    I have been Dx with ME and borreliosis, my CPn test shows this infection could be an issue too. However, I did not feel ready to rely too much upon Tx for these chronic infections to solve all my health issues.

    Professor Malcolm Hooper in the UK learned about ME and CFS as a result of studying autism and GWS; he has observed the similarities as well as the distinct differences in these illnesses. He also recognises the roles of toxins and infections in ME.

    I spent time thinking about inherited genetic tendencies; I felt understanding those would help me choose more appropriate Tx for my son and I. As it turned out this was the right thing to do. My research highlighted the need to do more than just get my diet right and treat the chronic infections I have.

    There is a lot of talk of trauma, stress, and the flight fright response here but little of it made sense of my medical history nor what I have been experiencing in the last 25 years. Although other family members had inherited some of the genetic tendancies, only my son and I became so adversely affected. One major difference that stands out is we both have had adverse reactions to vaccines, the very same vaccines that Dr Charles Shepherd has on his list of vaccines that can trigger ME (CFIDS) or make it worse.

    This brought me back to the links with autism and GWS.

    I was taking supps and herbs to support the two main detox pathways in the liver, but this was not as successful as I would have liked. So I looked at sulphur metabolism and started taking molybdenum.

    Because I had responded well to methyl B12 I went back over some tests I had done many years ago and that provided some real clues; I was markedly deficient in folate, and a test similar to that used in research on NADH showed a marked deficiency (interpreted many years ago as B3 and/or B6 deficiency).

    Rich Vankonynen’s research on glutathione, sulphur metabolism, and methylation brought about many discussions and exchanges of information on various internet facilities, I began to understand the implications of methylation better.

    Problems with methylation made sense of various test results spanning decades and my haematologist’s suggestion I go back onto high doses of folic acid. High doses of folic acid only helped a bit, my red blood cells remained larger than normal, and there was little improvement in other classic folate deficienciency symptoms, so I tried folonic acid that too failed to bring about the benefits I’d hoped for.

    Methylfolate is the only form of folic acid that works for me; this indicates my body does not make the necessary conversions. I had a pulmonary embolism even before I became ill, it was major and resulted in my spending a week in intensive care and almost a month in hospital. When researching methylfolate I came across research linking low levels of methylfolate with DVTs and PEs. Low levels of methylfolate have been linked to neuropathies and neuropathic pain in diabetes. Poor methylation can also lead to high levels of homocysteine and low levels of Sam-e.

    Sometimes it’s hard to see the wood for the trees, especially when so much remains uncertain in these DDs.

    Dee50s post titled “Crdmr2004/Metanx” includes information of a Rx she takes which helps with methylation.

    Carla-nl has posted important info on methylation and homocysteine titled “Part I: Homocysteine, Methylation, Glutathione & Vit.B uptake” and “Part II: Homocysteine, Methylation, Glutathione & Vit.B uptake”

    I posted one of Rich Konynenburg’s hypotheses on a topic tilted “CFS, autism, glutathione, and methylation”.

    Problems with methylation won’t apply to everyone, but if it’s present it’s going to make progress difficult if left untreated.

    I take TMG (Tri-methyl-glycine), Pyridoxal 5-Phosphate (B6), Methylfolate (folic acid), and sublingual Methylcobalamin(B12).

    Take care,
    Tansy[This Message was Edited on 07/21/2006]
  2. cobie

    cobie New Member

    Hi Tansy,
    Ive been doing the' Autism'abnormal methylation regime for several months now.[from the book'Autism: effective biomedical treatments by Jon Pangborn and Sidney Baker MD.']Too early to decide if its having an effect.? If you look at ARI WEB conferance on the net their are some video lectures by a Jill St James phd who is discovering the abnormalities in the methylation system. Will let you know. Good luck Cobie
  3. bpmwriter

    bpmwriter New Member


    i've connected my histamine problems to under methylation and take methionine now whenever i have a histamine attack. your post confuses me a bit though because i thought folic acid makes the problem WORSE? patients with histadelia due to metyhlation problems typically are prescribed anti-folate drugs in order to keep their folate levels down. methionine and calcium are used to support the metylation process.

    eddie
  4. tansy

    tansy New Member

    Hi Eddy

    Methylation is difficult to understand, it’s only recently been linked to autism and other illnesses.

    Many of us found we could be under and/or over methylating; without access to specialist testing, it’s easy to get bogged down by all the suggestions and information overload.

    Methylation goes through many stages, so it can be disrupted at any of these, that’s why there’s a variation in the supps people are taking. I know problems with methylation are part of the soup for me but not the one underlying cause.

    Some advocate starting with taurine but that causes me problems. When I had my amalgams removed in the late 80s I was given cysteine and methionine, they too made me much worse but not for the right reasons. Now the protocols used for amalgams/mercury have evolved and are more effective.

    I have read some Drs and patients insisting folic acid should be avoided because it feeds the pathogens; and I know folic acid has been identified as one trigger for histamine attacks. Ironically I have had severe allergic reactions, including anaphylactic shock, but they are nowhere near as bad now and seem to cycle just like many of my symptoms do.

    Since taking methylfolate I’ve had no increased problems with histamine, nor any signs pathogens are feeding on it, but maybe that’s because I’m taking methylfolate and not folic or folonic acid.

    If what you are taking works stick to it and don’t get too concerned when others address problems with methylation a different way. My protocol is pretty standard stuff but I know it’s not right for everyone.

    Hi Cobie

    I look forward to reading how you get on; it does take time as you pointed out. Good luck.

    I’d love to watch the video but my computer’s sound card isn’t working. I need a new computer with a large LCD screen and voice recognition software, but can’t afford it. This one is driving me up the wall, as is the pain through trying to use it.

    TC Tansy