This topic contains 7 replies, has 6 voices, and was last updated by  LS 4 days, 22 hours ago.

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  • #18420
     Ed Tobias 
    Keymaster

    A number of people have responded, on the main MS News Today website, to a column I wrote the other week about using Vitamin D supplements. I’d like to know the experience of MS forum followers. Do you take Vitamin D? If so, how much and do you get lab tests to monitor it?

  • #18426
     John Connor 
    Keymaster

    Like all the supplements I take for MS have no idea if vitamin D3 does anything – it’s just they might. And besides the cost their’s no real downside. Wrote a column about it early last year! 

    As my wife is keen to point out I was always an arch-skeptic about ‘alternative’ anything. I still am – everything I take has to have a snippet/root of scientific inquiry about it. That’s why I’ll never swallow anything dealing with homeopathy!

    The one outlier in all this is CBD/marijuana. You can’t have MS and not know all the reports from other sufferers that  it helps. As I’ve led an ‘alternative’ working career this was a drug that I’d spent time with. So now I tried it for more than just fun. The results were outstanding, indeed I know find it a necessity!

    It’s still illegal in the UK for all but a few for medical use. Please don’t grass me up….

     

  • #18427
     Judy Graham 
    Participant

    I take 10,000 in Vitamin D 3 every day. This part of Overcoming MS program. I’m in London, so not much vitamin D coming from sunshine around here. Hard to know what benefits just from vit  D as I take a load of supplements and also on a very strict diet.

  • #18591
     H 
    Participant

    75 μg vitamine D (3000 iu) and 290 µg of melatonin before sleep. For those of you, like me, with trouble falling asleep, do try melatonin, did wonders for me.

    Cheers! H

  • #18593
     jamie MACPHERSON 
    Participant

    Hi all, Jaylemac new here. Thought I would share my vitamin list that includes D3 4,000 daily double in the winter, current D3 test score at 210. I also take magnesium Citrate, Biotion, Flaxseed Oil, B12, B-complex, Vit C, B6, Vit K2 Mk-7.

     

    Do you all get tested for your vitamins yearly?

  • #18625
     LS 
    Participant

    Yes, I take vitamin D in high dose.
    I live in Denmark, and follow the Coimbra Protocol and I consult a protocoldoctor in Germany. I was diagnosed whit MS(RRMS) in january 2019, my sympthoms started a year ago in september/october 2018. I was dizzy, had fatique, numbness, weak muscles, problems walking, burning sensation in my hands and feet, problem with eyesigth, pain etc
    In the beginning I took only 2000 IU a day, and then 4000 IU. During the summer and before Coimbra Protocol I took 10.000 IU a day, I felt improvement and slowly many of my symptoms disappeared.  In september I started the Coimbra Protocol, taking very high dose vitamin D, under care and support by my protocoldoctor. And I am feeling so good, the healing process is speeded up. My fatique is gone, I don´t sleep during the day anymore, I can walk a long distance again. My MRI from june showed  my lesions in the brain has shrunk and the neurologist wrote MS regression in my journa, and that was on 10.000 IU a day.
    As I sit and write this morning in Denmark my MS-symptoms are: numbness in 3 finges on my left hand. When I stand up and walk around, I feel some small electric tingling in legs . Sometimes I still have Lhermittes sign, when I bend my neck, but it is almost gone.
    I´m on Aubagio prescribed by my neurologist to suppress my lymphocytes but my plan is to quit the Aubagio, when I feel ready.
    Thats my story for now. Please feel free to ask any questions.

  • #18629
     Ed Tobias 
    Keymaster

    LS,

    I’ve been using 2,000 IU of vitamin D for many years but have never used a higher dose. I’ve also been treated with several DMTs over the years including Aubagio, which worked well for me.

    How long have you been using Aubagio and how does that compare with the length of time you’ve been using the 10,000 IU of vitamin D? Is it possible your improvement is due to the Aubagio or are you convinced it was due to the vitamin D? My intention isn’t go downplay the significance of the D. I’m just trying to get a better handle on the balance between meds and alternative treatments.

    Ed

    • #18630
       LS 
      Participant

      Hi Ed
      I’ve been using Aubagio since mid-february. I think I was taking 2000 IU Vitamin D at that time, and slowly increased the amount of vitamin D, as I read about it on the internet and I felt a little improvement everytime I increased. You get 10.000 IU vitamin d from the sun alone, by sunbathing in the middle of the day in the summer by the way.
      I think that the vitamin D is helping me, by regulating and modulating my immune system and it improves myelination. Viamin D is actually not a vitamin but an steroid hormon. There is receptors (VDR) for vitamin d in nearly all cells in the body, and vitamin D regulates minimum 4000 genes in our body. So it is a powerfull hormon, and not good to have deficiency.
      On the Coimbra Protocol, we increase the amount of vitamin D a lot more than 10.000 IU a day, but only under the care of a medical doctor, that is very important!
      My knowledge of Aubagio is, that it inhibits the immune system and delay the progression of MS.
      The neurologist dr. Cícero Coimbra that created the protocol said it puts 95% of MS patients in total remission.
      I am convinced my improvement is due to Vitamin D.

      Try to google Coimbra Protocol and read about it and search facebook for Coimbra Protocol groups.
      LS

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