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Methylation confusion - should I stop the B12?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Hildergard, Oct 5, 2013.

  1. Hildergard

    Hildergard

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    Cornwall, UK
    Hi everyone - sorry for jumping right in with no introduction but I could do with some help.
    I developed major ME/CFS symptoms in 1998 (although I'd had some symptoms since childhood) but didn't get an official diagnosis till 2002. About 5 years ago I had my mercury amalgam fillings removed and although the results were verging on miraculous and gave me some sort of life back I have still had symptoms that were bad enough to impact on my life in a major way.

    Over the last 6-8 months I noticed that the neurological symptoms were getting much worse: pain/numbness/tinging in my hands and feet, vertigo,a feeling of mild electric shock right down my left side, major clumsiness and lack of co-ordination and I also started losing vision in both eyes for up to an hour. The other symptoms of brain fog and extreme fatigue were also increased but not as much as these other symptoms. The left side of my head and face feels like someone is rubbing ice cubes on me.

    My gp took it seriously enough to refer me to a neurologist who did a batch of blood tests and arranged an MRI scan on my brain. I am still waiting 2 months later to get access to these blood results and they say they haven't received the brain scans yet. As I'd noticed some of the tests were B12 related I asked the consultant's secretary what my B12 level was. It's 257 so they aren't worried about it. However, I eat a diet rich in all of the things I need so I was kind of 'hmm' at the 257. I don't know if they did MMA or homocysteine tests but I've paid £17 for them to send me the blood test results so I should have them soon.

    Because I don't know when I'm going to see the neurologist next I decided to buy some sublingual methylcobalamin (solgar and Jarrow 1000mcg lozenges) and started taking them. On the first day I took 1000mcg and then day 2 I took 2 and then day three I took 3. By day three I had such bad vertigo and my fatigue was extreme. Today is day 4 and I haven't taken any. I can feel the vertigo starting to subside and the fatigue is better but I am starting to get visual disturbance/loss in one eye.

    I wasn't aware of methylation and thought it was as simple as just taking a supplement to get better but having googled for side effects of B12 this forum kept coming up so I've joined (hello!).

    Should I stop taking methylcobalamin altogether or is it possibly healing symptoms? Although these symptoms are worse something has definitely changed for the better. I can't put my finger on what it is - maybe just that I feel 'straighter' somehow. I haven't had any insomnia (I've been sleeping better) and I haven't had anxiety so is it possible that it isn't methylation related and is just a detox reaction? I'm concerned about reading that methylcobalamin liberates mercury in a way that it can go back into your brain - have I read that wrong? Would I still have mercury in my system like that 5 years after amalgam removal?

    Sorry for all the questions - it's stressing me out a bit not knowing if I've set myself back permanently.
  2. Crux

    Crux Senior Member

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    USA
    Hi Hildergard;

    A B12 level of 257 is very low, and could easily be the reason for the neurological symptoms you're having. Most docs are uneducated about it.

    From personal experience, it took about a month for the vertigo to stop. It would come and go during that time.

    I'm inexperienced with the symptoms of mercury detox.

    Many of us found that the jarrow brand is no longer effective. I believe the solgar brand is pretty good, but the enzymatic brand is the strongest of the methylcobalamin sublingual types.

    As you read here, you'll find that there are many causes for fatigue, including B12 deficiency. The fatigue of B12 def. can take some months to subside, if you take enough, and the right type for you.

    The neurological symptoms can take up to a year or more to heal depending on theextent of the damage and length of time one has been deficient.

    I've made great strides, even though my conditon was pretty grim. I believe you can also achieve this with good treatment.
    helen1 and Violeta like this.
  3. caledonia

    caledonia

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    Cincinnati, OH, USA
    I don't think you've set yourself back permanently.

    Without a 23andme gene test to determine your methylation SNPs, it's hard to say if methylcobalamin is the form of B12 you should be taking. Hydroxycobalamin would be the safest for most people, in terms of avoiding adverse effects.

    In general, it's best to Start Low and Go Slow when doing methylation supplements (or really any kind of meds or supplements), so as to minimize or avoid adverse effects. 1000mcg of methylcobalamin right off the bat is not low or slow.

    Yes, I believe mercury could still be hanging around five years after getting your fillings out. Your body is able to detoxify mercury, but if you have certain genes and/or B vitamin deficiencies, this will be compromised. The bad gut bugs such as candida or h. pylori can also hang onto metals. So getting rid of the bad bugs can also help. In addition, if mercury has crossed the blood/brain barrier, it can take a special protocol (Cutler protocol) to get it back out.

    Personally, I would not attempt the Cutler protocol until I had my methylation and detox pathways working well.

    Check out the Methylation Made Easy videos in my signature below for more info.

    ps. forgot to mention - despite what your doctor says, your B12 results are low.
  4. Hildergard

    Hildergard

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    Cornwall, UK
    Thanks so much for the replies and for the video links. I watched the methylation made easy ones and it makes sense now. I bought the book 'Could it be B12?' and was going by that. I should have looked for more specialised information about ME/CFS and B12.

    I can't afford any tests unfortunately but I do have gut issues and was on a PPI for a while before I realised it was making me feel worse not better so I stopped. I've made a half-hearted attempt to address them by giving up alcohol and bread :D Pathetic really. I'll address the gluten issue more aggressively now.

    I forgot to mention that I take 10mg of amitriptyline at night to help me sleep and to help with nerve pain, Could that be a problem?

    Re: my doctor not taking it seriously: I couldn't even get my kinesiologist who has a phd in neurobiology to take me seriously. He said it can't be B12 because I'm not old enough. Hey ho.

    Thanks again. I'll cut the dose drastically and read the protocols.


    ETA: I was tested for H Pylori last Winter and it was negative.
  5. Hildergard

    Hildergard

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    Cornwall, UK
    Also, I don't know if this is an appropriate question for here but my CRP has been raised consistently for as long as I've been presenting symptoms to the dr - so in excess of 14 yrs. My kinesiologist had a 'look' at it the other day and said he thought it was something to do with some process that mops up dead cells. Does that make any sense to anyone?
  6. Crux

    Crux Senior Member

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    Just a Caveat;
    People with neurological symptoms may need alot more B12 than those without. ( I must take at least 15mg daily because, otherwise, the vertigo, neuropathy, and paresthesias return.)
  7. Sea

    Sea Senior Member

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    NSW Australia
    Chronically elevated CRP is associated with inflammation. People with arthritis, cancer, chronic viral illnesses and autoimmune illnesses usually have elevated CRP.

    Acute CRP elevations are seen in surgery, infection, viral illness. These go up quickly and return to normal quickly. For example after surgery it is expected to see a rise in CRP within 6 hours and a return to normal within 3 days. If it is elevated beyond 3 days after surgery it usually indicates infection.

    So while the raised CRP may have something to do with the process of mopping up dead cells, that is not an adequate answer. A chronically elevated CRP needs investigation to find the underlying cause.
  8. Hildergard

    Hildergard

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    Cornwall, UK
    That's exactly what I think. No doctor has ever been bothered by it though - just not interested. I'm going to try to pin them down about it and why they aren't investigating it.
  9. Sea

    Sea Senior Member

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    You have to wonder don't you, why do doctors bother to test something that they're not going to act on the results of anyway?
  10. Hildergard

    Hildergard

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    Cornwall, UK
    When it first came back raised I thought 'Hurrah! They'll find out where the infection is and do something about it'. Fourteen years later and whenever anyone says they want to test my CRP I say 'That'll come back raised, it always does' and they just look at me and smile blandly. Madness and a total waste of money.
    Sea likes this.

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