Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Vit D -- good for brain, bad for body

Discussion in 'General Treatment' started by outdamnspot, Jul 25, 2017.

  1. outdamnspot

    outdamnspot Senior Member

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    I find that 5-10k of Vit D gives me significant more mental energy and helps me at least concentrate on e.g. TV; without it, I can't even do that. But it triggers significant physical crashes. Does anyone else have the same issue?
     
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  2. PatJ

    PatJ far and free I gaze

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    For me vitamin D causes increased sensitivity to certain types of light (flourescent, LED), and, upon exposure to that type of light, I can have coordination problems and headache. It helps me to sleep better and increases dream frequency, but has a the effect of reducing my overall energy. At one point, many years ago, I was able to go for 1/2 kilometre walks but after a couple of months of vitamin D supplementation I was down to 100 feet max. I never recovered. I also found that I would overheat very quickly with just a little physical exertion. Once I stopped taking the vitamin D, within a few days the overheating problem diseappeared.
     
  3. keenly

    keenly Senior Member

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    YES

    Now I know why. The extra Vitamin D increases calcium uptake which increases inflammation. It also increases glutamate.
     
    Last edited by a moderator: Jul 25, 2017
  4. outdamnspot

    outdamnspot Senior Member

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    I was taking high doses for a few weeks and went into one of my worst crashes ever last month. Once I stopped it, my energy improved after about a week. However, I am always drawn back to it because of the cognitive benefits; it's frustrating to not be able to concentrate.
     
  5. xrayspex

    xrayspex Senior Member

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    interesting, I can never stay on it long enough to enumerate and articulate well why I don't like it---sort of like when I eat garlic or eggs, my world seems ruined but its hard to say why......I think its more pain and fatigue--I didnt used to notice anything on it either way I dont think--have had chronic pain and fatigue for 27 years but in the last 10ish years have started noticing strong negative reaction every time I try to take D for even a day--insomnia, strong irritability, discomfort.....feels like it ruins my day....and I have tried D2, D3, liquid, capsule, small dose etc come at it from every angle
    I have felt increasingly worse from being out in the sun during the summer as well and avoid that for over 10 years

    maybe my brain works better, sort of like when I tried prescription stimulants 15 years ago....but I feel so bad in other ways that it cancels out any cognitive improvement
     
  6. Wonkmonk

    Wonkmonk Senior Member

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    I don't know why, but I tried to go to higher-dose Vitamin D (3000-7000 IU per day) three times over the last three years, and each time, all my symptoms (brain and body) deteriorated strongly. It took several weeks to recover to the previous state of illness after discontinuing Vitamin D.

    I suspect in me and a lot of CFS patients there is something going on with calcium with too much calcium making things worse for some patients.

    I clearly feel that's the case for me.
     
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  7. BFitz89

    BFitz89

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    Maybe this is why I feel worse lately. I really ramped up my vitamin intake the past two weeks and I feel absolutely terrible.

    I hate this illness.
     
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  8. lnester7

    lnester7 Seven

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    I had to start low and increase slowly (I get very sick on it) I got to the point to think I was allergic to it. I try to sunbathe as much as I can now (which used to make me feel really sick too). But if you start slow and low and increase over time, body will be ok. It is just to high a dose to start with.
     
  9. Wonkmonk

    Wonkmonk Senior Member

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    That's interesting. I would be keen to learn if this is a wider phenomenon among CFS patients. I think that at least in a subset, higher calcium intake (Vitamin D increases absorption) creates problems. I strongly suspect my CFS is herpes virus induced, so perhaps this might be a specific symptom of that subset and help identify those patients in that subset.

    I have definitive proof (a whole series of blood tests over several years) that there must be something wrong with calcium in my body. It's impossible that a healthy person has Vitamin D 50 ng/ml plus 1000mg Calcium supplement, plus otherwise calcium-rich diet including daily dairy and still serum calcium is at times below the norm and there is persistent secondary hyperparathyroidism (elevated parathyroid hormone).

    I'd be interested in hearing if others here also have unexplained low calcium serum levels and elevated parathyroid hormone. There might be a link to the CFS.
     
  10. keenly

    keenly Senior Member

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    :thumbsup:
     
  11. Wonkmonk

    Wonkmonk Senior Member

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    Thanks for the thumbs up! :)

    Do you have similar experiences?
     
  12. keenly

    keenly Senior Member

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    What does Vitamin D do–and what should you know about Vitamin D?
    1. Facilitates increased intestinal absorption of phosphorus and calcium as well as suppression of parathyroid hormone secretion to increase our plasma calcium concentrations. It, however, does not dictate or direct where this calcium will be deposited in our bodies. There is also not a strong negative feedback control loop within the gut for Vitamin D.
    YES
    http://www.warf.org/for-industry/vitamin-d/vitamin-d.cmsx
    I believe we have major issues with calcium leaking into the mitochondria and magnesium leaking out. Every CFS doc and researcher I have spoke to agrees. It can be shown with blood tests that chemicals, nnEMF, allergens etc cause this.

    If we increase VIT D, but are having constant calcium efflux, are we going to feel great? HELL TO THE NAH
     
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  13. xrayspex

    xrayspex Senior Member

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    I never heard this before about calcium and magnesium. I know everyone recommends mag but I don't feel good on that either, think it detoxes me too fast which isn't pleasant.

    but that is interesting about calcium......I don't supplement with it just because binds me up....not sure how it effects me otherwise.
     
  14. Gondwanaland

    Gondwanaland Senior Member

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    If you come to think of it vit D is usually derived from lanolin (sheep's wool) which is a common allergen.
    I wonder if taking inositol would counter this effect. Inositol holds calcium inside the cells.
     
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  15. Webdog

    Webdog Senior Member

    No, I have not had this experience of crashing. Seems I get benefits without the side effects.
     
  16. Wonkmonk

    Wonkmonk Senior Member

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    Of course this is all just my personal speculation, but I think that the problems rather come from too much calcium inside the cells. My Serum calcium level is very low despite high Vitamin D plus high calcium supplementation, so I am wondering where does all the calcium go. Parathyroid hormone is also high and bone markers are in the norm, so I don't think it is going into the bone. In a 24-hour urine sample, no hypercalciuria was detected, so where does it go?

    I think too much of it goes into the cells and when there's an excess in the cells it is (a) lacking in the serum, as tests show, and (b) causing disfunction in the cells.

    So if this theory is correct, I'd rather need something that gets it out of the cells, not something that keeps it inside. Calcium channel blockers would seem to keep some of it out, and they have been helpful to an extent, but not much sadly.
     
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  17. Gondwanaland

    Gondwanaland Senior Member

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    I can only think of K2-mk4 which also lowers glutamate.
     
    Last edited: Jul 26, 2017
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  18. keenly

    keenly Senior Member

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    I need to look into this!! Thanks.
     
  19. keenly

    keenly Senior Member

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    Yes!!

    This is the issue IMO, based on research and following the work of numerous doctors.

    The biochemist who developed the tests Dr myhill uses sees this all the time. Dr Cheney states this too! He says Magnesium injections can help, they keep magnesium inside the cell for 4-6 hours.

    I think researchers in Australia are looking a this. This is the area that could help us a lot, not cure but give people a good quality of life. Personally if I has a lot of money I would fund Dr John McLaren-Howard http://www.neurolipid.org/who-we-are/medical-advisory-board/dr-john-mclaren-howard-phd/(mentioned above) and see if he could measure different substances and see if any STOP the calcium leaking into the cell/ knocking magnesium out.

    How can we get well if Magnesium, which is required for ATP reactions, keeps leaking out of the cell?

    Here is a great presentation on Vitamin D, by the genius Hector F. DeLuca

     
  20. PatJ

    PatJ far and free I gaze

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    Some people can feel worse because vitamin D can induce deficiencies, especially magnesium deficiency. It's very important to take the co-factors so that vitamin D can be utilized properly by the body.

    Here are some notes I've gathered about vitamin D:
     

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