Vitamin D

[gorbybelle]

does anyone think that the fact some of us 'lymies' feel worse - muscle pain esp.- when the summer weather is over - could be conected with 'low vitamin D' - just curious of others opinions on this.

Gorbs

[Corvin]

Yes most definitely. Because it's an immune modulating steroid among other things (hormone, genetic transcriptional activater) not a vitamin. I have Sarcoid not Chronic Lyme but my 2008 and 2009 relapses both started about 3.5 weeks after the winter solstice. Almost to the day of each other around January 16th. I'm at about 48 degrees latitude in the US, so the daylight gets fairly short. This 2009 relapse hasn't ended because I've been purposely avoiding the steroid. The 2008 relapse lasted about six months it started to go away after I was in the sunshine in May, feeling better had no positive influence on the coarse of the disease though because I really got sick this year. The remissions were only partial. Moderate sunshine is fine for healthy people, but I'm against putting steroids in peoples food or in a bottle and calling it a Vitamin. Chronically ill people have to avoid both, but can return to moderate sun exposure once they are recovered. Vitamin D (cholecalciferol, D3) supplementation and excessive sun exposure is the biggest failure in modern medicine/culture in my opinion. It would be like taking 5-30 mgs a day of Prednisone everyday of your life, you may feel better when you get more steroids in your system, but it brings down the defense of the innate immune system.

People as they get more ill start to over convert inactive hydroxylated cholecalciferol into active dihydroxylated cholecalciferol, 25(OH)D3 to 1,25(OH)2D3 by means of activated phagocytes, mostly parasitized macrophages. When this happens then you can get hormone imbalance especially in women that mostly effects the thyroid glands (hypothyroid, hypoparathyroid), adrenals (hypocortisol), and the high active cholecalciferol starts removing calcium from the bones. So giving Vitamin D supplementation to someone who over converts it to the active form will actually help lead to a condition it's mistakenly intended to prevent. Some people that are ill enough feel worse a few days later after to much sun exposure because their 1,25(OH)2D3 is already to high, and they made even more when they were in the sun. It varies depending on how much overconversion you have already.

Vitamin D "deficiency" has never been proven to cause a single disease not even Rickets. Their big evidenve for Vitamin D causing disease is people with autoimmune disease, chronic infectious disease, and cancer seem to have a low Vitamin D level but what that level is suppose to be is wrong. You can have an undetectable amount of D3 in your blood, but it doesn't mean there isn't available stored D3 in your liver, and fat. It's also still not understood if the body even needs radiation to make cholecalciferol.

Basically how can we decide what is a deficiency when we don't fully understand how the immune system and hormone channels work. Unfortunately we are not smarter than 7 million + years of the evolution of hominids. Most tests are done on mice, and rats, mice and rats aren't human, the mouse or rat doesn't have the immune system of a human.

I think it will remain a complicated and controversial issue, and a profit gimmick until molecular scientists start coming out and explaining what good old "Vitamin D" really is to the medical establishment.

Sorry for rambling but that's my 5 cents on the situation :) Take care

[JackieCalifornia]

Gorbs,

I don't know about this whole Vitamin D controversy.  Personally I feel better when I get a little sun, and I feel worse when I don't ... I've had MDs (not LLMDs) try to get me to take megadoses of Vit D 'just to fill up your empty tank' -- but it made no sense to me.  I've read the Marshall Protocol stuff, and it makes no sense to me either.  But maybe I'm just dense.

It would be interesting to hear from a Lyme patient who does tanning as to whether it helps mood and symptoms.  Anyone?

[wonko]

Well, I'm an indoors person myself!

I've never been sure on the vit D issue. As noted above, it is not really a vitamin and it plays many roles in the body, including the immune system, that are as of yet poorly understood.

I had one LLMD tell me that supplementing vit. D when you have chronic Lyme is like putting gas in a leaky tank, and he was against it.  My other LLMD (whom I still see and who has treated me) supports supplementing vit. D.  From time to time, I take a moderate dose supplement (I avoid the megadoses like JackieCalifornia mentions), especially before getting my routine blood work done, as this keeps my LLMD happy :-)

[Hope75]

Well, I was low in Vit. D on my last labs and my LLMD called in a prescription Vit. D supplement immediately.  I am in the South and I drive a convertible with the top down as much as possible.  I am a sun worshiper!  How did I get low Vit. D?  Lyme I guess.  I don't even use sunscreen!

So, I called my LLMD and he said he sees this alot with Lymies.  It must suck the sun right out of us:o)  I think I feel ok, but then I'll get a new symptom, so I don't know if the Vit D supplement is helping.  I think it cannot hurt, so I will continue to take it.

[patsy10]

  I also get worse when it turns cool despite having a normal D level.  Like Hope I also feel it cannot hurt.

[Corvin]

Did you move or something, Hope ? Why was I thinking you lived on a military base in New York state for some reason ? You should have your 1,25(OH)2D3 measured. Just do it to humor me if nothing else, if it's below 43 pg/ml I'll forever retire from MedHelp in shame :)

[mrs_k75]

My mom and DH both have severe vitamin D deficiency and are high strength supplements for it. Since most doctors thought I have was overreacting about my Lyme symptoms I never get vitamin test :( Now my DD and I are on vitamin supplements with D and doing better. I live in a sunny climate as well and yes people get D deficiency here.

[gorbybelle]

I guess it is a case of maybe - 'everything in moderation' - I am thinking I might take a good 'multi-vitamin' but then again I wouldn't know what effect each vit. was having!

Most of my symptoms are 'muscle' related - am I right in thinking that 'low vit.D' - can cause muscular pain/weakness ? - I know 'low magnesium' can affect the muscles.

I read-up on all the different - deficiency symptoms - for vit./minerals - but by the time I have done that I forget which one does what - it is good to hear what other folks have tried and it's effect.

Eating a well 'balanced' diet is probably the best way to go - but I don't stick to it - ie; the 'odd' sugary treat turns into a 'regular' sugary treat!!!
and the 'balance' goes 'out-the-window' - well.... we need something to cheer us up!!

gorbs