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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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    Cynocobalamin isn't a good type of B12 to take. It breaks down into cyanide. Hydroxocobalamin or methylcobalamin are the types of B12 recommended for methylation depending on whether a person tends to overmethylate or not.
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Check your A1C levels. Even if they are normal, you need to not have sugar and bad carbs. The nerves need to have a glucose level that is kept even, without the spikes from sugar. Alpha Lipoic Acid and Benfotiamine are both very important also. You are on those already. The book "Minding my Mitochondria" is an excellent book.
    August59 and heapsreal like this.
  3. Stillgoing

    Stillgoing

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    Hi Sallyblooms

    My eating is pretty good but it could be better. I looked at Terry Wahls diet. It sounds interesting. I've gone gluten and dairy free for long periods of time. Hers is the next step. I will definitely take steps towards her diet though

    Today I followed it relatively closely. I'm just experimenting with how practical financially it is amongst other things.

    It is annoying how it is more expensive to eat natural food
  4. Stillgoing

    Stillgoing

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    My last A1C level was 3.7 which is the high end of normal.

    I'll find out what my latest level is soon...
  5. Stillgoing

    Stillgoing

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    Hi Lotus,

    I am only taking Enyzmatic B12 now. My serum level is over 1000 now.. which seemed to shock the nurse when I rang up for the results
  6. Lotus97

    Lotus97 Senior Member

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    Those type of B12 tests aren't really helpful for people with CFS. This is from Rich about the subject:
  7. Stillgoing

    Stillgoing

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    Progress

    Day 30 of ALA (1 or 2 x 250)
    Day 28 Benfotiamine (3 or 4 x150mg)
    Day 23 Methy B12 Enzy took 3000 in morning- 2 hours.(plus 2 jar pm)
    Day 22 Solgar Methyfolate (day 12 2 x 400)
    Day 22 Magnesium Malate 3x1

    So I think things are improving slowly for me. Still convinced more than ever that my pains are directly related to B12 deficiency . Recent tests still show high MCV and MCH.

    Tingling and other sensations are less intense, although they worsened for a while. Sleep has improved a bit also. I'm thinking I really need or want to increase my methyl b12 to really high dose for a while. But it is so expensive in UK compared to US. i wish I could get methyl b12 on the NHS

    Thinking of also adding adenosyl b12 then LCF

    Have improved diet to included buckets of salad a day plus meat/ fish (Paleo-ish). My most recent HbALC is 40 (20-42) which is quite high so hopefully this will address that.

    As always any advice welcome...
  8. August59

    August59 Daughters High School Graduation

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    I bought one of those feet and calf massagers from like Brookstones. The cycle on it squeezes lower then goes on up the calf. When my feet get bad I use that lying down and it feels so good. When out and about I use the compression socks to keep any edema from squeezing on the nerves. Jobst and several brands make them in dress socks to wear with khaki's.
  9. Calathea

    Calathea Darkness therapy

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    Don't forget that if you order from the US and it comes to more than £15, you're likely yo be hit by a £11.70 customs charge. There are plenty of sources of mb12in the UK, though. I'm about to order the Swanson 5mg mb12 from Amazon for £8.75.
  10. Stillgoing

    Stillgoing

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    Before you do, I just ordered 12 enymatic therapy b12, which according to many people is the most effective, from http://www.yourhealthfoodstore.co.uk/.

    It is worth doing because you get 33 % of your first order. Delivery is free. Works out as £5.25 a bottle of thirty..for 12
  11. Stillgoing

    Stillgoing

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    but thanks also.

    I have just ordered some Swanson 5mg from Amazon.. to take alongside my Enzymatic B12... more cost effective
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    what about a tens machine, they would work well on lower legs.
  13. Calathea

    Calathea Darkness therapy

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    You can borrow TENS machine on the NHS from a physiology. Worth doing, since they don't work for everyone (they don't for me, for instance).
  14. Stillgoing

    Stillgoing

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    I've been using a cheap tens machine from Lloyds..

    I like it.. not sure if it helping...

    Im still puzzling over what is causing my tinglings....

    I have come to the conclusion is it partly muscle tension, part circulation, part B12 issues.

    I have extremely clicky joints, around the time thses paresthesias started, which suggests to me I am holding a lot of tension in my muscles.

    Stupid body....
  15. Stillgoing

    Stillgoing

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    Day 39 of ALA (1 or 2 x 250)
    Day 37 Benfotiamine (3 or 4 x150mg)
    Day 32 Methy B12 Enzy took 3000 in morning- 2 hours.(plus 2 jar pm)
    Day 31 Solgar Methyfolate (day 12 2 x 400)
    Day 31 Magnesium Malate 3x1

    I also tried one day of 33,000 of methyl b12 on Saturday. Didnt notice anything much.

    One thing that has happened in the last week is that I am getting a lot more skin crawling over most of my body when I am tired, Feels like I am being tickled everywhere. Quite intense sometimes. Apparently it is called formication

    Is it a good sign or a bad sign? Who knows.......
  16. Lotus97

    Lotus97 Senior Member

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    Have you considered supplementing with lithium? That's supposed to help with B12 transport. And I assume you're taking the B12 sublingually?
  17. Stillgoing

    Stillgoing

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    Yeah I am taking the b12 between my lip and gum. I leave it there for at least an hour, sometimes 2.

    Isn't Lithium primarily for mood stabilisation? Although that may be helpful in itself...
  18. Stillgoing

    Stillgoing

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    Aha.. I just read up... it seems helpful in many ways... curious.....

    Have you tried it?
  19. Lotus97

    Lotus97 Senior Member

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    High doses of lithium are used for bipolar disorder. The doses used for that are between 50-200 mg elemental lithium (from 300-1200 mg lithium carbonate). People take lithium orotate as a supplement. One tablet only has 5 mg elemental lithium so the dose is much lower. Most people do take supplemental lithium for mood disorders (sleep, depression, anxiety, etc), but lithium also can help with B12 transport. I don't know the specifics, but it has been discussed in the methylation forums. There's also a thread about transcobalamin deficiency:
    http://forums.phoenixrising.me/index.php?threads/transcobalamin-deficiency.23027/
    I have tried it. It didn't seem to help my mood, but I've heard from other people who have found it helpful. I was reading that it's helpful for brain inflammation so I think I will continue to take it because that seems to be a common issue. My serum B12 was high even though I had been supplementing with lithium and B12, but I was taking a low dose of B12 and I had only been taking B12 and lithium for a month or two so maybe it takes more time to work. I heard from who said their serum B12 went down after taking lithium. Maybe I'll ask them how long you have to take it before it works. To be honest, I can't tell if 95% of my supplements are working or not. I've thought about dropping a lot of them, but I'm afraid I'll have a crash if I do...
  20. Stillgoing

    Stillgoing

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    i think I might give it a try.

    But like you I am a bit worried about taking so many supplements, not being sure if it is helping or not and then being worried about stopping them...

    It is an expensive business....
    Lotus97 likes this.

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