The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Cicero Galli Coimbra Vitamin D Protocol for Autoimmune Diseases

Discussion in 'General ME/CFS Discussion' started by Folk, Jan 6, 2015.

  1. Folk

    Folk Senior Member

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    Hi.
    Have anyone ever went deep in the work of Cicero G. Coimbra?

    His a well known brazilian neurologist who admnisters mega doses of Vitamin D (along with cofactors like omega 3 and other vitamins) for MS and other Autoimmune Diseases.

    He has been successfully treating MS, Crohns, Psoriasis and many others.

    Most information about him is in portuguese, but also can be found in MS forums and perhaps other autoimmune foruns.
    He claims a 95% success rate with MS and 100% with crohns. In MS even the brain lesions are supposed to heal when the disease is noticed early.

    With both the well known relationship between M.E and MS and the increasing factors that indicate M.E has autoimmune problems I wondered if this protocol may work.

    I'm going to see a doctor of his team in January 13th.

    This video has english subtitles. He explain most of his work.

    That's a documentary on his work. Also with english sub.
     
    merylg and Theodore like this.
  2. maryb

    maryb iherb code TAK122

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    Good luck hope they find something that works for you.
     
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  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    How did you doctor visit go? Have you started high dose Vitamin D?

    Have you seen this study?

    http://www.catie.ca/en/treatmentupd...-immune-activation-and-vitamin-lessons-multip
     
  4. Folk

    Folk Senior Member

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    My visit went well... The doctor was pretty kind and listen carefully. He gave me the protocol, I was supposed to take 80.000 units of Vit D. It's basically 1.000 units/kilo. He also said patients with Fibromyalgia had a pretty good response in the treatment (note that Fibromyalgia means both Fibro and ME, since no one has ME diganosis arround here)
    I decided not to try it for now... I ended up going to Dr. Kaufman and trying LDN etc etc...

    I still follow some patients in Facebook groups and they seems to be doing amazingly well... Still I'm afraid to try it, don't really know why... But if things I'm trying now don't work out I'll be trying that for sure.

    That study just reinforces that... Thanks for the link. If you'd like to know about those facebook groups or anything related you can ask me and if I can I'll do my best to help :)
     
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @Folk
    Yes please - I'd like to learn of the experiences of others with ME trying high vit D.
     
  6. Folk

    Folk Senior Member

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  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Awesome, thanks.

    I watched his video interview with English sub-titles - very edifying.

    MS rates are higher in Canada, a lack of vitamin D production would certainly fit with his theory. Its not such a great leap of logic to try to experiment with it for ME.

    I already worship Ra the sun god whenever possible and have been on 5000 IU for a while but will bump this up over the next few weeks.
     
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  8. Folk

    Folk Senior Member

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    Yeah, Dr. Coimbra says 10k units should be taken by anyone just for precaution. He said that's what we produce in 15-30 minutes of sun exposure, then the body stops producing.
     
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  9. gregh286

    gregh286 Senior Member

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    hi
    @Folk . do you still do the coimbra protocol?
    did you get benefit...or.from ldn?
     
  10. knackers323

    knackers323 Senior Member

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    wathching
     
  11. Folk

    Folk Senior Member

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    I've never started the protocol on the first place cause I've gotten a lot better throught this year.
    I don't know what made the most difference. I'm taking currently taking LDN, eating REALLY clean (No dairy, no gluten, no fructose cause I developed malabsorption, no sugar, nothing processed. I think that's the most important. I probably cheated 2 or 3 times in two years), sleeping, taking, lyrica, anti histamines, b12, methyl folate, and NeuroProtek. I also did Hyperbaric Oxygen.
    The protocol still not off the table... but for now I'm seeing where I'll go... I still keep seeing lots of people who had great success with the protocol.
     
  12. gregh286

    gregh286 Senior Member

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    great to hear!!!
    long may your health improve........
    cheers.
     
  13. knackers323

    knackers323 Senior Member

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    @Folk I get good benefit from following the same diet. Seems the less I eat the better I feel.

    Seems many others feel better from the same clean diet. Dont suppose you have a real idea why it helps?

    I guess a diet like this is generally good and it seems our bodys are reacting to food and causing immune activation and inflammation.

    @ScottTriGuy how did you go with the vit d?

    I have only just started it and ive seen others mention it made them tired. It hasnt so far really made me tired through the day but I am having the deapest sleep I have possibly ever had.

    For the first time in as long as I can remember I am sleeping right through the night and dreaming again.

    The deep sleep feels really good and restorative so im hoping it will help the body recover.

    The only other thing ive tried that I can remember had similar effects was a short trial of hgh so I wonder if the D3 has any effect on hgh levels?

    Hgh is said to be one of the best treatments fo pwcfs. I wonder if thats because it is a chain of amino acids and it somehow fits into the fluge/mella theory and the fact some people are finding benefits from amino acids.

    There was a guy around about 10 years ago that claimed a big recovery rate by treating with amino acids. If it worked so well we probably wouldn't all still be on here though.

    Anyone trying the D3 be carefull of the brand you use. I used one brand and felt the effects on the first day. I ran out and went backwards after a day. I began with another brand fir a week and felt nothing.

    Ive gone back on the original, NOW liquid D3 and felt the benefit the first night again
     
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    If I recall correctly, I was taking about 10,000 a day in the spring before I switched over to d-drops - I am not at all accurate with a dropper so am totalling guessing that I take between 5000 and 10000 a day currently. Can't say its definitely helping, but can say it isn't hurting.
     
  15. knackers323

    knackers323 Senior Member

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    @ScottTriGuy any effect on your sleep? maybe try upping the dose.

    those under this drs treatment are taking up to 150 000iu

    if you up the dose it is advised to take a couple of other things and avoid dairy also
     
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  16. dr. Arf

    dr. Arf

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    I am surprised there is little take on this Coimbra Protocol at Phoenixrising.

    I am fascinated by this treatment, and contempleting to try out.

    Unfortunately very few are trying it out.
    Afraid to try someting new out (or the socalled toxicity issues that Vitamin D could have)?
    Or just to difficult to get it managed in the medical world?
     
  17. gregh286

    gregh286 Senior Member

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    I think there is a language barrier issue.
    Its seems really popular and huge following in facebook but never really twigged on the english speaking west.
    I think its a grossly overlooked protocol.
    Vit d toxicity putting people off.
     
  18. knackers323

    knackers323 Senior Member

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    i initially got very good results with high dose vit d. as always it didnt continue
     
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  19. dr. Arf

    dr. Arf

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    @knackers323
    Is it possible to extend on this?
    I mean did you Follow the treatment with a COIMBRA PROTOCOL doctor?

    NB: there are's not so many to be found so it also depends a lot where you are based
    (check:
    https://www.google.com/maps/d/u/0/v...Q&ll=45.309646386162825,19.83354959999997&z=8)


    Did you follow the protocol or did you experiment yourself?
    And at what doses ?
    And for how long?
    - As I understand it normally take some time for effects to take off - that is with other auto immune diseases...
     
  20. knackers323

    knackers323 Senior Member

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    hi. yes i just did it myself at pretty high doses. dont remember exactly but can find out if you like.

    i rhink the benefits were from it raising my blood pressure or something similar. i noticed the effects within an hour or so from memory.
     
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