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GcMAF and Calcitriol (Vitamin D (1,25))

Discussion in 'GcMAF' started by ttt, Dec 25, 2013.

  1. ttt

    ttt

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    I could have sworn I read something here about monitoring Vitamin D (1,25) levels before/during GcMAF, but now I can't find it. Could someone please fill me in? I have mutations in both my VDR Fok and VDR Taq/Bsm genes, and after taking 10,000iu of Vitamin D for a few months, I got my Vitamin D (25-OH) level up to 63, but my 1,25 is way high -- 115. So I need to figure out what this means and what to do about my Vitamin D.
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Are you taking GcMAF? My doc told me not to supplement Vit D while taking GcMAF even though I also have SNPs in both VDR. He told us to monitor D 25 and 1,25 closely, especially the first months.

    Best,
    Sushi
     
  3. ttt

    ttt

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    Hi, Sushi. No, not taking GcMAF -- still just contemplating it. I have a million concerns about it. I thought people with VDR mutations were supposed to be non-responders, or at least low responders.

    As for monitoring D 25 and 1,25, what are they wanting to see before and during the treatment?
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It doesn't seem to have fully panned out that people with VDR mutations are non-responders. I have the mutations that should be worst and I am a moderate to high responder.

    They want to make sure that your D 1,25 does not go too high. Both my 25 and 1,25 normalized after a month on GcMAF. It is rare for the D 1,25 to rise on GcMAF, but for caution, my doctor asked that I monitor it. If your D 1,25 is high and you are contemplating GcMAF, it might be suggested that you stop supplementation and let it go down before starting.

    Best,
    Sushi
     
  5. Symptomatic

    Symptomatic Senior Member

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  6. MEfighter

    MEfighter

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    Hi Sushi and all,

    I'm new to the forum but most certainly not to ME. I'm a bit confused about this Vit D GcMAF thing; perhaps you or others could clarify for me. I'm going to start GcMAF soon but I was under the impression that you need to UP your vit D if it's low in order for the GcMAF to work better. I read this on the GcMAF makers' page (Belgium):

    "GcMAF needs normal levels of vitamin D (40ng/ml+) to fully function."
    "Laboratory tests have shown GcMAF is 2.5 times more effective with normal levels of vitamin D."

    This I read here: http://www.gcmaf.eu/patient-resources/treatment-strategies/

    And also:

    "GcMAF needs normal levels of vitamin D3 to function fully; we recommend 10,000 IU daily."

    Same webpage. They make the GcMAF that is bought at KDM's clinic in Brussels, I think.

    So I'm really confused now when reading that we need to check that D levels don't rise. Can you explain this to me? I also read someone's comment on this thread (sorry major brainfog; very hard to write properly even atm) that his doctor said not to take Vit D while on GcMAF? Why not? It's very confusing. GcMAF is very expensive; I want get it right! :)

    My 25 OH is was 19,2 at time of testing. Range is 20,0 - 43,0. I have for some time now suspected low vit D levels to be one of the reasons for my pain. It's the second time I test low and was about to buy Vit D3 supplement until I read that this patient who's on GcMAF that his doc told him not to take vit D supplements when on GcMAF.

    My 1,25 Di is 66, 3. Range is 20,0 - < 75,0 so it's close to high. I've not started GcMAF. Also even though this D is within normal range there is a * before this result and it doesn't mean abnormal (abnormal result is highlighted).

    Does anyone have the understanding that the GcMAF will raise D levels? Should I wait and see if this will raise them (because my levels are low)?

    Thanks.
    Vitamine D3 (25 OH-)
    1,25 Di-OH vitamine D
     
  7. MEfighter

    MEfighter

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    Symptomatic,

    Why do you recommend this?

    I thought optimal Vit D levels were necessary in order for GcMAF to be effective. Just trying to understand as I have low 25 OH levels and will be starting GcMAF soon.

    Thank you.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi @MEfighter,

    What you quoted is the opinion of GcMAF.eu. It is not the opinion of many doctors who treat with GcMAF and it was not the opinion of my doctor.

    I don't know how it works scientifically, but GcMAF did normalize my ratios of D 25 and D 1,25. My doctor wanted me to stop supplementing D and get regular checks of these two--particularly in the first few months.

    You could do that and if you find that you are still low on the two forms of D, then supplement cautiously if you wanted to go that route.

    Best wishes sorting out confusing information,
    Sushi
     
  9. MEfighter

    MEfighter

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    Hi Sushi,

    thanks for sharing your experience. Did your doctor tell you why he doesn't recommend supplementing D while on GcMAF? If, as you say, many doctors who treat with GcMAF are also of this opinion, there would be a shared reason for this; do you happen to know why they are of this opinion? Would be great to understand the why behind it esp with the conflicting info up on GcMAF.eu.

    Yes, I'm thinking of holding off on supplementing until I get more clear info on this issue.

    Thanks and best wishes
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He is concerned at the possibility (however remote) that D 1,25 could go too high and thus calcium as well. And, he has found that Vit D levels usually normalize when on GcMAF.

    Best,
    Sushi
     
  11. MEfighter

    MEfighter

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    Thanks for this Sushi;

    Yes, it makes sense. My 25D is quite low at 19 but my 1,25 D is at 66 (cut off max is 75) without the GcMAF so I will definitely wait to see if the GcMAF will normalize these. I will post here how I get along in case it's helpful to others also. :)

    Wishing you renewed health!
    xoxo
     
  12. xrunner

    xrunner Senior Member

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    If you look at Cheney's study on his patients, he found that the best predictor for response to Gcmaf (injections, sublingual and probiotic) was the change in levels of Calcitriol.

    If I remember this right, both those patients that had an increase in an initially low/normal Calcitriol and those who instead had a decrease in an initially high Calcitriol reported clinical improvements. Levels of vitamin 25D and Nagalase did not predict clinical improvements. However, it has to be said that the patient population was quite small, about 20 for each type of Gcmaf.
     
  13. MEfighter

    MEfighter

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    Hi Xrunner,

    I did not know this but it's very useful to know. Thanks for letting me/us know. I'm new to GcMAF; I haven't started taking it but will be starting in the very near future and trying to gather info. Knowledge is power. I'm bed/housebound 95% of the time and on the whole, over + 2 decades, my health is deteriorating which is scary...

    So my 1,25 D was at 66,3 when tested. Range is 20,0 - less than 75 so I'm guessing I'm bordering on high without the GcMAF. Will be interesting to retest and see.


    My nagalase is high but not insanely high. It's not a result that makes my jaw drop whereas my NK cells which are almost absent; that is a jaw-dropping result. My CD57 absolute count is an 8. Range is 60 - 360. I read this is indicative of Lyme but it has to be the NK not the T-cell count so have to ascertain which was tested. On the test results it says "absolute count" so... have to get in touch with lab to ask them.

    Take care
     
  14. Symptomatic

    Symptomatic Senior Member

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    This isn't related to Gc-MAF per se, but it indicates to me that perhaps the thinking on "Vitamin D" is shifting.

    http://www.thelancet.com/journals/landia/article/PIIS2213-8587(13)70165-7/abstract

    In which they state: "However, whether low 25(OH)D is the cause or result of ill health is not known...The discrepancy between observational and intervention studies suggests that low 25(OH)D is a marker of ill health. Inflammatory processes involved in disease occurrence and clinical course would reduce 25(OH)D, which would explain why low vitamin D status is reported in a wide range of disorders."
     
    maryb likes this.

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