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Vitamin D and / or sunlight making your ME worse?

Discussion in 'General ME/CFS Discussion' started by bird78, Oct 21, 2017.

  1. bird78

    bird78

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    Hi,

    I would like to know if anybody else experiencing that they can't tolerate vitamin D in any form ( pills, drops, transdermal cream, sunlight, sunbeds)?
    It makes me so much worse (fever, fatigue, flu-like, brainfog etc).

    I think this means the Marshall protocol would be right for me or what do you think?

    Hoping for answers.
     
  2. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I have gotten improvement from Vitamin D, sunlight exposure. I'm waiting for winter to try pills. However, it does come with a very strong tiredness, you could call it fatigue.

    It's quite different though than the fatigue of ME/CFS. But it is followed by better sleep and higher energy levels in the weeks to come. And subsequent exposure isn't nearly as tiring.

    I hope you can find the answers that you are looking for. :)
     
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  3. lnester7

    lnester7 Seven

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    I used to react very bad to the sun, and I mean baaaaaddddd, I would crashed inmidiately and sleep right there. I avoided the sun like the plague. To be honest I don't know if it was the high herpes load and the antivirals took care of it or the OI meds. But I can tolerate now without crashing.
     
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  4. Joh

    Joh Inactivist

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    Hi @bird78, also can't stand being in the sun any more (even for a few minutes), makes me feel much worse and magnifies all symptoms. But no idea why.
     
    Last edited: Oct 21, 2017
  5. ukxmrv

    ukxmrv Senior Member

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    It depends on what the Marshall Protocol is at the moment. It evolves and changes when ever I took at it (and that's only every 3 or 4 years).

    I tried to limit my Vit D way back when it first started but I felt much worse in the darker months. In the summer it's a question of avoiding heat rather than sun for me.
     
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  6. Wonkmonk

    Wonkmonk Senior Member

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    I got much worse when I pushed Vitamin D above 30 ng/ml on three separate occasion with increasing fatigue, brain fog, joint pain. It was a very slow process over several weeks, I wouldn't say I couldn't tolerate vitamin D, taking it initially was no problem, but over time things got worse and they got better again slowly once I stopped the vitamin D. That happened three times over 2 years, so I am very certain there is causality with high vitamin D intake.

    On time it was during summer from sunlight (I sunbathed every day) and two times it was with supplements to treat secondary hypoparathyroidism.

    I think it's part of the disease for some patients that too much vitamin D (or for some perhaps even low doses) makes them worse, possible because calcium channels don't work well anymore for these patients.

    Here is a thread of several similar cases. I also commented:

    https://forums.phoenixrising.me/index.php?threads/vit-d-good-for-brain-bad-for-body.53034/
     
  7. Artorias

    Artorias

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    I had to stop taking vitamin D supplements because I was 99% sure they were making me more ill. And now others have mentioned it I realise I definitely get worse in direct sunlight, although not sure if that's more the heat, but seeing as I live in the UK that's probably not it :D
     
  8. Jcj225

    Jcj225

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    I had my levels checked recently and it was at 13ng/ml which of course is very low indeed so I’m using 5000ug daily for a month, maybe longer to get the levels up. It has been 10 days and I’m not feeling any different. I have been feeling particularly terrible the last 5 weeks and I wonder if this is the reason why but now I’m hoping a level too high doesn’t make things go the other way like some people seem to be reporting...
     
  9. notmyself

    notmyself Senior Member

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    sunlight makes things better for me..i loved it since always( i'm born in middle summer)..even now sick,i feel much better in sunny days, cold and cloudy is a problem for me...
     
    Last edited: Oct 21, 2017
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  10. aaron_c

    aaron_c Senior Member

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    There's actually a thread on this: http://forums.phoenixrising.me/index.php?threads/vitamin-d-sensitivity.37336/

    I have a theory I posted elsewhere. I've updated it a little bit, so while most of this is copied from here, the bits about sunlight making me tired when taking VIP and MK-4 helping with vitamin d fatigue are new.


    Why Does Vitamin D Make So Many Of Us Tired (And Can Anything Be Done)?

    Many of us with ME/CFS get quite exhausted from oral vitamin D (see this thread). Personally, I suspect this is from an interaction between vitamin D and TGF-Beta, which "potently induce 5-lipoxygenase," at least in myeloid cells [1]. Many people with CFS have high TGF-Beta [2]. I tested this theory on myself by taking the 5-LO inhibitors acetyl-11-keto-beta-boswellic acid (AKBA) and Vitamin K (MK-4), both of which proved successful in eliminating the vitamin d-induced fatigue--although over time they failed to prevent other side effects and I had to abandon oral vitamin D3 [3].

    Whatever the cause, using a UV-B lamp gives me most of the benefits of oral vitamin D without triggering any of the negative side effects.


    Why Does Vitamin D Help With My "Ammonia" Symptoms?

    The main benefit I get from vitamin D is a lessening/elimination of so-called "ammonia" symptoms, which I believe to essentially boil down to BH4 deficiency caused by NOS uncoupling caused by an increase in asymmetric dimethyl arginine (ADMA) relative to arginine [4]. Vitamin D deficiency increases production of TNF-alpha by white blood cells exposed to lipopolysaccharide [5], and TNF-alpha is known to decrease the function of DDAH, which breaks down ADMA [6]. Low vitamin D has also been correlated with high ADMA [7]. So it seems likely to me that, at least for some of us, vitamin D will decrease ADMA and thus increase BH4.

    To some degree the particulars of the science don't really matter. The essential story is that I feel unwell (in a very particular way) within a day or two of skipping out on my UV-B lamp, and that this particular unwell feeling can also be eliminated by oral vitamin D (albeit with some severe side effects). So I can tell that the UV-B lamp is doing something, and I can attest that whatever it does it appears to share many functions with oral vitamin D3. And it does this without the severe fatigue and other negative side effects I get from taking oral vitamin D.


    What is the difference between oral vitamin D and vitamin D made in our own skin?

    I don't know for sure, but I've found two possible explanations:

    1. The first explanation is simply that a UV-B lamp and even sunlight produce much less vitamin D than an oral supplement. I stared wondering about this after two days where sunlight caused fatigue that was ameliorated with AKBA. I hat just started taking vasoactive intestinal polypeptide at the time, and Shoemaker says this can raise TGF-beta in some people--so my working theory is that higher TGF-beta made me even more sensitive to UV-B, and maybe that can account for most of the difference between oral vitamin D and sunlight.

    2. Nonetheless, if the vitamin D I produce from sunlight is much less than what I was taking orally, it was also more potent in its ability to prevent ADMA-type symptoms. The best explanation I have found for this
    comes from the controversial researcher Stephanie Seneff, who says that vitamin D produced in the skin is in sulfated form, which gives it somewhat different biochemistry from the vitamin D3 found in, for instance, cod oil [8]. She also claims that sunlight stimulates the skin to produce cholesterol sulfate, although I'm not sure what, if any, role that plays here [8].


    Sources:

    1. Sorg BL, Klan N, Seuter S, Dishart D, Rådmark O, et al.Analysis of the 5-lipoxygenase promoter and characterization of a vitamin D receptor binding site.Biochim Biophys Acta2006;1761: 686–697.[PubMed]
    2. Bennett AL, Chao CC, Hu S, Buchwald D, Fagioli LR, Schur PH. Elevation of bioactive transforming growth factor-beta in serum from patients with chronic fatigue syndrome.J Clin Immunol.1997;17:160–166. doi: 10.1023/A:1027330616073.[PubMed][Cross Ref]
    3. Sailer ER, Subramanian LR, Rall B, Hoernlein RF, Ammon HP, Safayhi H. Acetyl 11-keto-b-boswellic acid (AKBA): Structure requirements for binding and 5-lipoxygenase inhibitory activity. Br J Pharmacol. 1996;117(4):615–618. doi: 10.1111/j.1476-5381.1996.tb15235.x. [PMC free article] [PubMed] [Cross Ref]
    4. Schwedhelm E, Boger RH. The role of asymmetric and symmetric dimethylarginines in renal disease.Nat Rev Nephrol.2011;7(5):275–285. doi: 10.1038/nrneph.2011.31. Link
    5. Yong Zhang, Donald Y. M. Leung, Brittany N. Richers, Yusen Liu, Linda K. Remigio, David W. Riches, And Elena Goleva.Vitamin D Inhibits Monocyte/Macrophage Proinflammatory Cytokine Production by Targeting MAPK Phosphatase-1.The Journal of Immunology, March 1, 2012 DOI:10.4049/%u200Bjimmunol.1102412. [or see the summary here]
    6. Ito A, Tsao PS, Adimoolam S, Kimoto M, Ogawa T, Cooke JP. Novel mechanism for endothelial dysfunction: dysregulation of dimethylarginine dimethylaminohydrolase.Circulation.1999;99:3092–5.[PubMed]
    7. Ngo DT, Sverdlov AL, McNeil JJ, Horowitz D. Does vitamin D modulate asymmetric dimethylarginine and C-reactive protein concentrations?Am J Med.2010;123:335–41.[PubMed]
    8. http://articles.mercola.com/sites/articles/archive/2011/09/17/stephanie-seneff-on-sulfur.aspx (Apologies on this last link...I hope in the future to be well enough to really look into this. For now, I will take Dr. Seneff's assertion as a fascinating possibility.)
     
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  11. HowToEscape?

    HowToEscape? Senior Member

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    There’s a big difference between vitamin D circulating and the immediate effect of sitting in the sun. Vitamin D from sun exposure is formed at the skin and vitamin D is fat soluble, so the levels in your system change slowly.

    A month of daily sun exposure is going to change your vitamin D levels if they were low, a half hour is not. If you are knocked out right after 20 minutes worth of Sun it’s something other than vitamin D which is causing the crash.
     
  12. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Here's some more info on that.

    Beneficial effects of UV radiation other than via vitamin D production
     
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  13. sb4

    sb4 Senior Member

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    I would add that D supplementation increases calcium absorption and decreases potassium. Also there is no regulation of levels in your body for oral vit D compared with sun. Finally I remember reading somewhere about oral vit D, the majority gets stored in fat cells and not much is left in circulation. This has the potential effect of causing excess D problems if you then o on to lose weight.

    I also think there are many, many other advantages to getting D from sun light.
     
  14. bird78

    bird78

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    Hi,

    Thanks for all the replies!

    I have to clarify some things first. In my history of ME, many years I could not tolerate the sun at all, giving me fever, infectious feeling, complete bedridden. But the last years I have thought I tolerated the sun and have been catching as much sun as possible in the summer. And buy the way, I have always loved the sun and sun bathing. However, every spring, I got worse of my symptoms, and in the middle of the summer sometimes it would be better. I now can see that it was when I started sunbathing, my symptoms got worse. And this year I felt it right away, and could not tolerate the sun again. I get easily tanned, so I guess my body is protecting me from getting too much vitamin D.

    This year I also discovered it was the sunlight through the eyes that was the biggest problem, as I one day was laying in the shadow of a big parasol but forgot my sunglasses. After that I got really, really sick. And I thought to read more about the Marshall Protocol. And when I look back I can see how sunlight has made me worse.


    For those of you familiar with the Marshall protocol, you’ll know that vitamin D for many people makes them feel better, but in fact it is making them worse. Vitamin D is a steroid hormone, and taking steroids will make you feel better for a while, but is actually doing damage to your immune system, by weakening it. So that could be the case when you feel better after sun or vitamin D.

    Since I have had low vitamin D (25-OH-D) for many years, I have tried all kinds of vitamin D supplements (oil drops, pill, transdermal cream, and the UVB-lamp) which of all made me bedridden and much worse.

    I was wondering if other people also got this sick from vitamin D (and I mean vitamin D and not sunlight), since it is written more about feeling better from vitamin D, even if it does do harm. I can literary feel the harm…

    I also do feel much better during the dry, warm summer months. That is from the climate. Humidity and bad weather makes me sick and achy too.


    It is for sure that sunbathing gives you much, much more vitamin D than any pill can give, and that is in just 10-15 minutes. It is this way nature intended us to get vitamin D (which is actually not a vitamin at all, but a hormone).
     

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