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Getting rid of my neuropathic pains, my attempt

Discussion in 'General Treatment' started by Stillgoing, Mar 27, 2013.

  1. Lotus97

    Lotus97 Senior Member

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    keyword: Business:) Still, I have heard from many people who have had success with various supplements so who knows?
  2. Stillgoing

    Stillgoing

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    Day 44 Benfotiamine
    Day 39 Magnesium Malate
    Day 47 of ALA

    Day 39 Methyfolate (2 x 400)
    Day 39 Enym B12, 4mg
    Day 4 Aden B12 3mg in morn
    Day 2 Lithium Oretate 5mg
    Day 1 LCF (500)

    So this is my update.

    As can be seen I am refocussing on Fredd's B12 protocol. I now have the introduced Adenysol B12, Lithium Oretate and LCF to the mix... (probably too quickly)

    As with all supplements I havent noticed much difference. Obviously I have only just started some of them.

    Not noticed any potassium issues.. on 2/3 bananas a day.

    Sleep pretty crappy.

    Neuropathic pains still pretty bad. What ever part of my body I use too much, I get fizzing for days.

    Hoping LCF will give me more strength. Lithium will even my mood and aid in B12 transport. Hopefully methylation has been kickstarted in some way... but no idea.

    My main issues are still weakness, stupid fizzing in muscles which drives me mad, and some anxiety.
    Wired but tired has always described the way I have lived with M.E.

    Trying to learn to ignore the fizzing.... but its tricky...
  3. Lotus97

    Lotus97 Senior Member

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    Are you taking other b vitamins? Those are important for so many things including folate metabolism, recycling glutathione, and Krebs.
  4. Stillgoing

    Stillgoing

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    Hi Lotus,

    I'm taking a high strength b complex most days. I have to choose carefully what to spend money on.

    I am actually disheartened by my apparent lack of response to anything I take, or have ever taken. I took gabapentin for 5 days, just to shut my doctor up, with zero noticeable effect.

    All I know is if i don't move much for days, and sleep okish, I get less pain. I sometimes mistake this as real progress.

    i dont know what Krebs is, but it sounds pretty painful
  5. Lotus97

    Lotus97 Senior Member

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  6. Stillgoing

    Stillgoing

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    Problem is I also don't know if my paresthesias are actually neuropathic or not.

    When I started this thread I probably didn't have a full understanding of anything really

    My doctor believes my pains are coming from misinterpretation of signals from my brain.

    Does that help me?.... er no..

    I have a friend who has/had Lyme. After 2 years of anti-biotics, he told me the only thing that he perceived to make a difference was increasing his level of serotonin. No matter... he is much better now.
  7. Crux

    Crux Senior Member

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    Hi Stillgoing;
    39 days is early on. Neuropathy can take 3-6 months to begin to get better. ( hope that's not discouraging)
    Did you try a 'loading dose' of B12? Sometimes a period of higher dosing helps.

    Hang in there!
  8. Stillgoing

    Stillgoing

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    Cheers Crux..

    I have tried a loading dose of 30mg twice. May try another one tomorrow. ...
  9. camas

    camas Senior Member

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    Stillgoing

    Sorry to hear of your struggles with neuropathy. I'm not sure why this worked, but one of the first symptoms that disappeared when I started taking daily Zyrtec was the paresthesia in my arms and legs. Just gone after 25 years of annoying the hell out of me. I still have some neuropathy in my feet and have noticed that when I up my dose of Zyrtec it improves, but then I'm too sleepy to function. So I've added another shorter acting H1 blocker at night to see if that helps. I can't tell yet since I'm upping the dose really slowly.

    I take gabapentin off and on for general FM pain which it does seem to help, but it's never made much of a dent in my paresthesia either. Neither did B vitamins including B12 shots. Anyway, just a thought I share that in case you want to add something else to your arsenal!
  10. Stillgoing

    Stillgoing

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    Cool... I'll buy some H1 blocker tomorrow, or whatever UK drug has

    It is worth a try I think. A cheap, quick trial.
  11. Stillgoing

    Stillgoing

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    camas

    For a trial run, how long would you suggest?
  12. camas

    camas Senior Member

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    It seemed to work pretty quickly for me. I think I noticed it in the first week or two? Good luck!
  13. Stillgoing

    Stillgoing

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    I should update.

    80 days of Methylation supps.
    Still taking ALA LCF, Magnesium, Lithium. AdenB12
    Added D-ribose
    Added extra B2

    MCV has decreased finally, having another test in 10 days to see if it has gone down further.

    Pains generally a bit better.

    I think most of them are associated with muscle fatigue so trying to increase ATP.

    More active than I was...

    Back in Czech Rep.

    Slowly going to try and work a bit

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