The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

High daily doses of vitamin D3?

Discussion in 'General Treatment' started by Dolphin, Aug 22, 2016.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,644
    Somebody has asked me the following. I thought I would throw it out here and pass on any feedback that came back:

    Edited to add:
     
    Last edited: Aug 23, 2016
    barbc56 likes this.
  2. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,297
    Albuquerque
    The question is: what are the megadoses he is talking about? Some might say a megadose was 5,000 IU; someone else might say 20,000 IUs. I am on a protocol from an MD that includes 10,000 IUs. This will give me a lab score of about 100 for Vit D 25 (the usual test). Edit: my calcium is normal.
     
  3. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,644
    Thanks. I have asked them.
     
    barbc56 likes this.
  4. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,046
    Likes:
    2,910
    Vancouver, British Columbia
    Do blood tests indicate that this person needs a mega dose of D3? Cure them of what? And they need to be sure to get their calcium levels checked as Vitamin D can push the levels up too high and that is dangerous.
     
    cfs6691, Valentijn, barbc56 and 2 others like this.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,644
    ME. Thanks for your reply.
     
    barbc56 likes this.
  6. Kati

    Kati Patient in training

    Messages:
    5,432
    Likes:
    19,355
    My honest answer: if it was that simple, we wouldn't be all here days in, days out, months, years, decades...
     
    barbc56, TigerLilea and Dolphin like this.
  7. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,078
    U.K
    they need to be careful with Vit D as it acts as a hormone in the body. If they have underlying bacterial infections such as Lyme or Cpn it can cause herxheimer reactions - particularly reported in people with Cpn.

    My Dr advised against it as levels of 1.25 oh were normal, but the regular test was lowered - this could drive inflammation. I didn't believe them so took about 3,000 iu a day for about 5 days and sure enough I got a massive increase in inflammation - including severe joint pain.

    On the other hand, some years ago Dr Myhill prescribed it for me and it really helped my cognitive issues.
     
  8. ErdemX

    ErdemX

    Messages:
    96
    Likes:
    209
    Istanbul
    There is a Megadose Vit D protocol found by Dr. Coimbre for MS and other autoimmune diseases and I think there should be a discussion about it here in PR. In his protocol, daily doses are extremely high (like 80.000 IU) and while the doctor monitors some blood levels, the dose might be kept that high for years. He claims that he has a very high success rate in stopping (not curing) MS, but those are only his claims.

    The long video link with subtitles are below, and it explains the approach throughly..



    As I haven't been getting any improvement with my current treatment, I just wanted to give it a chance. I've been taking 80.000 IU daily for 4 weeks now.

    I never had a worsening or more inflammation from it. Actually, this doctor thinks that those megadoses should decrease and control inflammation driven by immune system. But so far, I can't say I'm any better. I will test my PHT and calcium levels and probably carry on one more month.
     
    Dolphin, ScottTriGuy and justy like this.
  9. Jemima

    Jemima

    Messages:
    42
    Likes:
    9
    I have been using Solgar Vit D3 for some time but you do have to be very careful not to overdose on Vit D like Justy says,
     
    barbc56, Dolphin and justy like this.
  10. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,114
    Likes:
    44,062
    If their doctor thinks he can cure them of ME with vitamin D, they need a new doctor :p
     
    Art Vandelay, Mij, zzz and 3 others like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,644
     
    barbc56 likes this.
  12. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,046
    Likes:
    2,910
    Vancouver, British Columbia
    Your doctor should be checking your 25(OH)D to check your Vitamin D levels. The 1.25 -D test is used when calcium levels are high. You can have a normal 1.25 -D test and have low levels of 25(OH)D.
     
  13. Mij

    Mij Senior Member

    Messages:
    2,212
    Likes:
    4,483
    By this, do you mean preventing MS from worsening? I don't think he can make such a claim.
     
    barbc56, Valentijn and Kati like this.
  14. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,124
    Yes! I developed kidney stones. I am also susceptible to them, however, this can also happen by taking too much of D3. So I now supplement with very low dosages of D3. I can't take calcium supplements but am suppose to increase my dietary calcium.

    Edit.

    You can have normal or low blood levels but a 24 hour urine test can show elevated calcium if your kidneys leak calcium.
     
  15. barbc56

    barbc56 Senior Member

    Messages:
    3,526
    Likes:
    4,124
  16. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,078
    U.K
    I may be confused, it may be the other way round. I can never remember which si which.
     
  17. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,078
    U.K
    I checked - my 25 OH was low - at 10.6, while my 1.25 was normal range at 34.6. I was told not to supplement as it would raise inflammation and this is exactly the experience I had- I was in agony when I started on Vit D at only 2-3,000 iu a day. But maybe this is because I have Cpn?


    http://www.cpnhelp.org/vitamin_d_1
     
  18. Mij

    Mij Senior Member

    Messages:
    2,212
    Likes:
    4,483
    Doctors should also be testing magnesium and calcium levels before recommending higher dose vitamin D. I started absorbing vitamin D more efficiently when I got my very low levels of mg levels up, and therefore now only need 2000iu/day vit D.
     
  19. Mij

    Mij Senior Member

    Messages:
    2,212
    Likes:
    4,483
    @justy that could be the case, but when I took 3000/4000iu's a day for over one year my 1.25 Hydroxy went above normal ref range and I felt terrible. too.
     
    justy likes this.
  20. ErdemX

    ErdemX

    Messages:
    96
    Likes:
    209
    Istanbul
    He claims that something like in %90 percent of MS patients, the MS activity stops. If there is a permanent damage, it stays but he says that some patients gain some of their abilities back to some degree, like movement, balance.. He claims that maybe ten times in this video :) I know it sounds so weird. But it also doesn't look like a way to make money.
     

See more popular forum discussions.

Share This Page