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How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

Discussion in 'General ME/CFS Discussion' started by Beyond, Dec 8, 2013.

  1. snowathlete

    snowathlete

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    "Serum 1,25(OH)2D levels were higher in CD (57 pg/ml) versus UC (41 pg/ml) (p = 0.0001)."

    Mine when tested was 41.2.
    This is good because I still have an MRI test to rule out Crohns as well. :thumbsup:
    Beyond likes this.
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I had both tested this fall. My doctor also tested ionized calcium. She said that the 1,25 (OH) D could be as high as 76 as long as the ionized Ca was OK.
    25-OH D: 34.7. Lab range: 30.0 - 80.0
    1,25 (OH) D: 36. Lab range: 18 - 72.


    Although my levels are normal, I am continuing to supplement at 1000 IU/day (down for 10,000 IU/week) because it is winter, I live in the north, and I have osteoporosis.
    Beyond likes this.
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    For what is worth snowathlete, I found out in a IBD forum a guy saying that propolis pills cured his bloody diarreah (I think he had crohns but not sure) The guy had like 1000 posts so it wasn´t some kind of pied piper. I bought propolis pills and effectively when I take 6 it helps a lot with intestinal inflammation. We will buy it here in chunks though now that we found a guy that has propolis.
  4. maryb

    maryb iherb code TAK122

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    The paper says that 'elevated 1,25-dihydroxyvitamin D is a sign of chronic inflammation, they only looked at CD and UC.
    This is what KDM is basically saying but with reference to ME and Lyme.
    I'm sure he will have his own study findings out at some point regarding this.
    Waverunner and Beyond like this.
  5. kisekishiawase

    kisekishiawase sad

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    ijust found out when i order vit d 25 oh test that my result was really low =12. i dont know if its accurate and not though or should order another test. does vitamin d 1.25 test really needed? also my calcium and magnesium blood lvl was normal?? if i intake much vitamin d what if the calcium goes high and it will caused bad effect also magnesium?
    however i read that vit d defiency link to gut issues? or autoimmune? another puzzle..
    i read its link to cancer too which worries me :(
    Last edited: Dec 18, 2013
    Beyond likes this.
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Kiseki that result is most likely accurate. Low 25-D is a common denominator in chronic inflammatory/autoimme illness. Is normal to have it low/very low if you have CFS or anything of the sort. The 1,25-D test is I fear very needed, because a subset of ill people have it very high and supplementing D3 is these cases could be detrimental.

    Yeah is linked to intestinal permeability as it is needed to maintain the epithelium integrity, so is vitamin A and zinc and many others... I will take magnesium oil with my sublingual D3. Note that I never had the test of 1,25-D but I am pretty sure that supplementing vitamin D will be beneficial in case since low 25-D seems to be related to sleep disorders.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm not 100% sure, but I think that Vit D moves the calcium (and magnesium?) to where it is needed, mostly the bone, so it should not raise levels. Hopefully it helps to prevent the minerals being laid down in the wrong places like blood vessels.
    Last edited: Dec 18, 2013
  8. kisekishiawase

    kisekishiawase sad

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    so its important to test for 1,25d? i wonder if i can get that :(
    i read that vitamin a will block vit d but i read that cod liver oil high source of vit d @.@
    do you read issue about magnesium feeds biofilm?
    this makes me hestitate to take magnesium malate that i just bought
    do you go out in the sun often? also what about your diet? i wonder if one or some of those factors could cause low vit d
    thanks for the post :) i read varieties report from people some said when they take vit d it lowers cal so they take cal to balance it. other stated it increase their calcium.
    yi also read about that role of vit d but before i also read thats the role of vit k2 (or k3) seems like its related or something o_O
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Note edit from 10%-100% - I missed out a zero! I am definitely at least 10% sure!
    Beyond likes this.
  10. camas

    camas Senior Member

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    Here were my latest results:

    Vitamin D, 25 Hydroxy: 13.6 (Standard Range 30.0 - 100.0)
    Vitamin D 1,25 Dihyroxy: 64 (Standard Range 15 - 75)

    I've tried a handful of different Vitamin D supplements and can't tolerate even low doses because they hype up my immune system (or degranulate my mast cells?). I don't get this effect after sun exposure or using my vitamin D lamp. But even using my lamp every day didn't increase my D, 25 levels. In fact they dropped from 18.5 to 13.6. It's all rather confusing.
    Last edited: Dec 18, 2013
    Beyond likes this.
  11. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I am sad to announce that sun exposure for some reason is not enough to raise 25-D blood levels not only in the chronically ill but also in seemingly healthy population. I´ve seen it in many studies now. It raises vitamin D but not much, most of people are defficient, the sicker you are the lower.This might be because of chemtrails. The reason is unknown for now, what we know is that there is an epidemy of Vitamin D defficiency.

    @kisekishiawase I sunbathe without much clothes everyday. Makes me look and feel better. Some of us need to supplement vitamin D simply because of our ill state and diet or sun won´t be enough. Cod liver oil is great if you don´t have fat malabsorption and was the first thing I tried. I am not scared of biofilm, but it should be of me! Now seriously, I know my case and I need magnesium. I don´t think I have Lyme or any other biofilm critter.
    Last edited: Dec 18, 2013
  12. kisekishiawase

    kisekishiawase sad

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    then what are you gonna do?

    i read that high d 1,25 and low d25 caused by infammation ? does testing crp help identify?
    unfortunately i cant get vit d 1,25 test now im confused :( im afraid if taking vit d3 will caused bad effect if i dont know my vit d 1,25
    about magnesium isnt gut bugs also/could be from biofilm
    so how about this theory?
    Last edited: Dec 19, 2013
  13. camas

    camas Senior Member

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    @kisekishiawase,

    My doctor didn't know what to recommend. He's as confused as I am. I decided to stop using the lamp and will get retested in a few months to see if it was affecting either number. In the meantime one of the things I'm doing is taking vitamin K2 to help move calcium out of my blood and into my bones since I have osteopenia.
  14. Msinnott

    Msinnott

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    Here are mine levels. I was supplementing 10,000 iui m-f trying to get my levels up. Finally had my doc run a 1,25 to see what was going on since I couldn't get my levels up. Here are my results. Vitamin D 25OH 51.7 (32-100) and vitamin D 1,25 145 (15-75). I have normal calcium levels 9.2 (8.5-10.1). I have since stopped all vit d but curious if I should have any further testing done or wait and retest in 2 months. I know since i stopped all vit d 3 days ago I am getting increased joint pain and my eyes feeling all scratchy. I know i read that high levels of 1,25 can be immunosuppressive.
    Beyond likes this.
  15. kisekishiawase

    kisekishiawase sad

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    your d25 oh doesnt seem low?
    propolis, royal jelly supposed to be good but i found it hard to find the pure ones. :( sea cucumber and brown seaweed is also good from what i read.
  16. Msinnott

    Msinnott

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    Well that level was taking 10,000 iui you think it would be way higher. I was just trying to get to 70. But I had no idea that it was converting to 1,25 vitamin d. I was looking on 23andme and I have several snps mutations in vitamin d pathways.
  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Kiseki the brand of propolis I take (Y.S. eco farms) is pretty pure, smells very good and it is helpful for intestinal inflammation. Rojal jelly we will see.
  18. nandixon

    nandixon Senior Member

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    My vitamin D levels are:

    25-Hydroxy = 30.6 ng/mL (ref 30-100)
    1,25-Dihydroxy = 75.4 pg/mL (ref 10-75)

    Definitely not a normal result.

    This is after averaging about 600 iu of vitamin D3 daily from all sources for at least a couple years. Taking vit D3 in amounts from 1000-3000 iu per day greatly exacerbates my fatigue, so the overly high 1,25-D level seems consistent with that problem.

    However, I recently decided to try taking 5000 iu per day and, interestingly, the larger amount doesn't seem to cause as much fatigue as the smaller doses. It's still bad though. (My vitamin D intolerance is definitely not related to low magnesium or vitamin K.)

    I'm next going to try increasing my daily phosphorous/phosphate intake, while also taking the 5000 iu D3, to see if that will allow the 25-D levels to go higher while normalizing the 1,25-D levels.

    I had to stop consuming all milk products (a migraine trigger* for me) prior to the onset of ME/ CFS some 15 years ago, and milk is very high in phosphorus. (*After the onset of ME, milk was not only a migraine trigger but also made the fatigue much worse.)

    I'm hoping I might fall into the "phosphate diabetes" category that has been talked about on this thread here:

    http://forums.phoenixrising.me/inde...-patients-with-chronic-fatigue-syndrome.4494/

    It's really a shame that the vitamin D intolerance issue that a significant subset of ME/ CFS people have hasn't been studied in more detail. It might be very revealing for the group as a whole.
    Little Bluestem and Beyond like this.
  19. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I´ve been now supplementing 10.000 ius of sublingual D3 per day for two weeks. I don´t think is doing anything bad or wrong (and that sucks), but I wish my doc would prescribe me a Vit D blood test just to see.
  20. Msinnott

    Msinnott

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    I found out from someone else who had the same problem that I was having and they started supplementing with a calcium 1000mgs and mk7 and 5000iui of vit d supplement and their 1,25 levels over two months dropped from 128 down 62. I realized that back in march when I started doing the methylation protocol I stopped my calcium supplement. So i just started back up and already feeling so much better. Will retest in 2 months.

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