Stop Vitamin D ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Stop Vitamin D ?

Postby BBE » Wed Nov 10, 2010 5:51 am

I suppose most of you supplement with Vitamin D as my wife with MS does. Recent news regarding its positive effects on viral/bacterial diseases (common cold, flu, etc.) and its relation to onset of MS and so on created a hype mostly in USA and it slowly gets to the rest of the world.
For example at "our" onset of MS 2008 we started with 400 IU D3 / daily among other supplements. (Note 400 IU pills are the highest dose freely available in our country and to get tested for vitamins is almost impossible) Then we increased the dose to 800/1200 IU with more pills, then ordered 2000 IU package from US, up to 10 000 IU package this year as my information about its positive effects rose. I won`t mention any effects as I didn`t notice any significant yet and we also don`t know our blood levels. Her symptoms are minor and still under control (except worsened sight due to optic neuritis) though there are many frightening signs coming up one day or another.

Few weeks ago I noticed somewhere on internet that there is also alternative view to Vitamin D. I didn`t want to believe it first as that was only a minority of reports and I couldn`t also believe that Vitamin D isn`t the best Vitamin anymore until recent posts here on TIMS:
too much calcium? http://www.thisisms.com/ftopict-14299.html

As I see it, vessel "blockage" through hypercalcemia (caused by Vit. D overdose) is maybe one problem which may be adressed by Vit. K2 or Magnesium supplementation, but there is also another one which lead me to so called "Marshall Protocol" through http://bacteriality.com .
Than I watched some presentations on youtube regarding VDR Receptor and Olmesartan drug and must say: We are stopping Vit. D supplementation as I don`t know what is true anymore.

In short, how I understood it, they say that your 25-D levels should be under 18ng/ml (45 nmol/L) as it is in most healthy patients. If it is higher, than your body suppresses your innate immunity and various pathogens can live in your body long-term. Most of these pathogens have the ability to suppress your immunity too so with Vit. D supplementation you actually suppress your immunity even more. The drug Olmesartan should have the ability to block these processes and help the immune system restore and kill the pathogens eventually with help of antibiotics.
That`s all I learned today, so if you have some information or insights regarding this topic please share it.

Surprisingly there are also few sites and forums on these issues which I haven`t read properly yet.

http://mpkb.org/
http://www.marshallprotocol.com/
http://www.curemyth1.org

(I know, it may belong more to bacterial hypothesis, but as Johnson said, it may be a bacteria that is causing CCSVI.)
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Postby TMrox » Wed Nov 10, 2010 7:07 am

BBE,

I think the best before taking any supplement is to get tested especially for vitamin D, calcium and magnesium.

My calcium levels are fine. I'm now awaiting for the results of vitamin D and magnesium.

I suspect that my vitamin D will be low because I was housebound for several months and live in UK, no much sun here.

I'm now reading a very interesting book "the calcium lie". the problem is not with vitamin D. The problem might be mineral imbalances, especially excess of calcium as many of our foods have added calcium. juices, cereals, milk, etc..

See more about this book at:
http://www.youtube.com/watch?v=prSMCxJBubQ
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby Direct-MS » Wed Nov 10, 2010 8:17 am

An essay on the two opposing views on vitamin D and MS is at http://www.direct-ms.org/magazines/Opposing%20Views.pdf

To me the amount of data indicating vitamin D deficiency is a big part of MS is overwhelming. However each person with MS has to make their own choices regarding therapies - is an MS drug worthwhile, should I get tested and treated for CCSVI, should I raise my 25D level to 150 nmol/l and on and on. There will be opposing views on every therapy and one must do their own research and make their own decisions.

For my son we decided to not use an MS drug because there is no evidence they affect long term progression and there is lots of evidence they have bad side effects. We decided to go for CCSVI treatment because the current science shows the potential upside far outweighed the potential downside. Finally, he takes 8000 IU of vitamin D a day because the science strongly supports the benefits of such a dosage and resultant metabolite levels.

There are no certainties. Each person makes their choices on the data they have and how they see it. It is always worthwhile to hear a given person's rationale for using or not using a given therapy.
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Postby MS_HOPE » Wed Nov 10, 2010 9:50 am

Thanks for this helpful information and link, Direct-MS. I'd also decided it made sense to supplement with vitamin D (specifically D3), though frankly I haven't been able to attribute any benefits to its use. Still, based on the available info and relatively low cost, it's a decision I'm comfortable with. That said, I wouldn't be surprised if the vitamin D/MS connection ultimately turns out to be more relevant during gestation and early life; much more research needed.

I'm of the opinion that a healthy diet (like the Best Bet Diet) is extremely important to all pwMS. Some have been able to actually eliminate all or most of their symptoms using special diets like this or the MS Recovery Diet, Ann Boroch's anti-candida protocol, Swank Diet, etc. Others have had substantial benefits with certain supplements, such as those containing certain polysaccharides (count me among them).

For women, I think natural (NOT synthetic) hormones - estrogen and progesterone - as studied by Dr. Rhonda Voskuhl can be helpful. They've substantially reduced my spasticity, stiffness, and achiness.

We're all different, and MS is so variable and no doubt multi-factorial, so I've approached it holistically, trying what seems to make sense. A never-ending project, it seems!
CCSVI:  Making Sense of MS
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Postby Leonard » Wed Nov 10, 2010 9:59 am

you may find more information on http://www.overcomingmultiplesclerosis. ... Vitamin-D/

I take about 5 g of cod liver oil a day.
Besides Vit D, this also contains Omega 3 fats.
For the role of fats, see http://www.overcomingmultiplesclerosis. ... -Overview/

I have also seen this message pass by that Vit D would not be good. I can not trace it anymore, and do not know what do with it.

When I mentioned the supplement Vit D to my neurologist a few years ago, she said this was dangerous and potentially poisonous. Don't know where she got it from. Recent studies seem to indicate that high levels are safe. But whether it is for MS?

I will continue to take the cod liver oil in modest proportions. And because I do not have real heat intolerance, I take as much sunlight as possible.
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Postby davmets2 » Wed Nov 10, 2010 1:03 pm

I just had a blood test for Vitamin D prescribed by my neurologist. I called his office and informed my count was 23 and was told it should be a minimum of 36? Anyway I was put on 50,000 iu's of vitamin D3 once a week for 4 weeks and than told to take 2,000 iu's of vitamin D daily in addition to my multi vitamin and the calcium with vitamin D that I already take.
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Postby BBE » Wed Nov 10, 2010 11:17 pm

Thank you for the links, and for the essay. I am more inclined to supplement Vit D again but it would be great if someone could definitely describe the interactions between 25-D and 1,25D; and dismiss or confirm this alternative theory.
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Postby dreddk » Wed Nov 10, 2010 11:46 pm

The author of the anti vitamin d study is a well known quack

http://www.sciencebasedmedicine.org/?p=563
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Re: Stop Vitamin D

Postby NHE » Thu Nov 11, 2010 12:49 am

Hi BBE,

BBE wrote:Thank you for the links, and for the essay. I am more inclined to supplement Vit D again but it would be great if someone could definitely describe the interactions between 25-D and 1,25D; and dismiss or confirm this alternative theory.


Here's a good review paper on vitamin D that covers many of its physiological effects. The full paper is available for free.

Dusso, A.S., et al. Vitamin D. Am J Physiol Renal Physiol 289:8-28, 2005.
http://www.ncbi.nlm.nih.gov/pubmed/15951480

I hope that it's helpful for you.

NHE
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Postby shye » Wed Nov 17, 2010 7:09 pm

got my blood results for D1,25 and D 25-OH:

had stopped supplementing the D for a few weeks prior to testing:
results were
1,25 is HIGH at 74 (range is 19-67)
25 OH is down to 44 (range is 30-100)
So, conforms to the view that should not be taking so much vit D just on measuring the 25-OH. Quite necessary clearly to be measuring the 1,25.
(Which my dr had not done before).

My arteriosclerosis in arteries showed up on xray and ultrasound ONLY AFTER had taken such hugh amts of Vit D to bring it up to the high amts being recommended for MS patients (esp by the Vitamindcouncil.com group).(And was taking Mg with the D). My brain lesions were prior to taking the hugh amts of D, but were after taking large amts of calcium (for osteo) along with "only" 800 IU's of Vit D. So maybe many of our MS brain lesions are from taking the Ca and D so highly recommended-- see in 2007 research: http://www.sciencedaily.com/releases/20 ... 115230.htm

So, am decreasing Calcium supplemental intake, and stopping all supplemental intake of vit D.
And taking Vit K2 to try to get the Calcium out of the arteries.
And will talk to my dr to see if a parathyroid test is warrented; who knows if its action could have been interfered with by this excess supplementation.
Will post in 5 months when get new ultrasound of carotids and abdominal arteries done.
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Postby Johnson » Thu Nov 18, 2010 12:47 am

shye wrote:got my blood results for D1,25 and D 25-OH:

had stopped supplementing the D for a few weeks prior to testing:
results were
1,25 is HIGH at 74 (range is 19-67)
25 OH is down to 44 (range is 30-100)
So, conforms to the view that should not be taking so much vit D just on measuring the 25-OH. Quite necessary clearly to be measuring the 1,25.
(Which my dr had not done before).

My arteriosclerosis in arteries showed up on xray and ultrasound ONLY AFTER had taken such hugh amts of Vit D to bring it up to the high amts being recommended for MS patients (esp by the Vitamindcouncil.com group).(And was taking Mg with the D). My brain lesions were prior to taking the hugh amts of D, but were after taking large amts of calcium (for osteo) along with "only" 800 IU's of Vit D. So maybe many of our MS brain lesions are from taking the Ca and D so highly recommended-- see in 2007 research: http://www.sciencedaily.com/releases/20 ... 115230.htm

So, am decreasing Calcium supplemental intake, and stopping all supplemental intake of vit D.
And taking Vit K2 to try to get the Calcium out of the arteries.
And will talk to my dr to see if a parathyroid test is warrented; who knows if its action could have been interfered with by this excess supplementation.
Will post in 5 months when get new ultrasound of carotids and abdominal arteries done.


That is fascinating about the 1,25 D levels and high 25 D. My understanding is that it actually down-regulates the immune system (1,25 clogs the VDR - which regulates 913 genes - and inhibits uptake of 25 D.

Supplemental calcium demands supplemental magnesium 2:1. So many foods fortified with D and calcium, but no magnesium, or zinc. (Zinc kills colds).

Other than being a smoker, I am a model of healthy living. I had played around with Vit. D for years, and was taking up to 20,000 IU/day. I had effectively killed colds by taking 100,000 IU at a dose, but all of that preceded me seeming to go SPMS. I have not taken Vit. D for 2 months now, and am taking Olmesartan 160 mg/day last 6 weeks, and I seem to be feeling better. I'll know better as 6 months pass.
My name is not really Johnson. MSed up since 1993
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Postby TMrox » Thu Nov 18, 2010 4:40 am

shye,

Based on your lab results of Vitamin D I'm not sure whether you should stop taking vit D altogheter.

Your vitD 25-OH are not high. According to the ZRT lab range, the optimum levels should be around 50-80ng/ml.

I found this, that might explain your results

"1,25(OH)2 vitamin D [1,25-D] is more difficult and expensive to measure than 25(OH)D; moreover, it is not a good measure of vitamin D status.

When patients are vitamin D deficient, the parathyroid hormone increases and drives the renal 1-alpha-hydroxylase, so that 1,25-D levels increase. Only in severe deficiency, when substrate is depleted, does the 1,25-D become low. Partially treated vitamin D deficiency also results in marked elevations of 1,25-D levels.

Some doctors, thinking they are sophisticated because they know that 1,25-D is more active, order the wrong measurement. Do not fall into this trap and waste money on this expensive but often misleading test! There are only a few situations where you would actually want to know the 1,25-D:
unexplained hypercalcemia (looking for granulomatous disease or lymphoma),
suspected genetic childhood rickets,
suspected tumor-induced osteomalacia,
some cases of nephrolithiasis or hypercalciuria. "
http://courses.washington.edu/bonephys/opvitD.html


If you are concerned about your calcium/magnesium levels, then a more direct approach will be to test these. Dr Sam Kabbani who has triggered this discussion, found that his patients in Kuwait had excess of calcium and low magnesium. Since Vit D absorbes calcium into the body he suggested to stop taking vit D for a while, but only for a while until calcium/magnesium levels get back to normal.

He tested his patients for calcium/magnesium using hair tissue analysis.
You can see here why you might want hair tisse analysis and not blood test:
http://www.youtube.com/watch?v=prSMCxJBubQ


Vit D is so important for many diseases. Look for instance this article

"
Annals of Neurology 2010: Clinically we find that raising 25-OH-D levels by 50nmol/l could halve the hazard of a relapse.

Higher 25-OH-D levels were associated with a reduced hazard of relapse. This occurred in a dose-dependent linear fashion, with each 10nmol/l increase in 25-OH-D resulting in up to a 12% reduction in risk of relapse. Clinically, raising 25-OH-D levels by 50nmol/l could halve the hazard of a relapse. ANN NEUROL 2010;68:193-203."
http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334
Last edited by TMrox on Thu Nov 18, 2010 12:02 pm, edited 1 time in total.
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Postby Interrupted » Thu Nov 18, 2010 9:35 am

Well, I for one have tried supplementing vitamin D and D3 in small and large doses. natural and synthetic, before to no personal result (positive or negative).

Thus will be test driving the flipside theory that what seems to help in the short term can actually hinder in the long term. I will be giving the "quack" doctor's protocol a go as cautiously and safely as I can as i've been reseaching it for a few weeks now. It won't be an easy one by a long shot but they rarely are, and no one is making any money out of it. It's controversial as all new theories are but the basis does actually make sense to me and I have always believed that bacteria and viruses have been a majority of the cause of my problems. So we shall see!
28/07/10, 04/10/10, 16/11/10 - CCSVi Dopplers x3 ** 12/10/10 - Poland procedure. Symptoms worsened. No improvement.
13/02/12 - Wheldon ABX protocol for 1.5yrs. Fairly stable but no improvement. Unable to source alternate ABX needed.
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Postby jimmylegs » Thu Nov 18, 2010 12:44 pm

i don't have my medical files at my fingertips right now - will chime in later :)
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Postby TMrox » Thu Nov 18, 2010 1:02 pm

I found this interesting table produced by the ZRT lab. According to a number of studies, the optimal level of vit D should be around 50-80ng/ml. Lower levels are correlated with specific diseases.

Image

Full report here: https://www.zrtlab.com/view-document-de ... min-d.html


By the way I got my Vit D results (using 25-hoD test). I've got 29ng/ml and my husband who is completely healthy has 28ng/ml. That reflects we live in England and our diet.

I'm awaiting my hair analysis test to see how my calcium/magnesium levels are so I can increase my intake of vitamins/mineral supplements.
Last edited by TMrox on Sun Nov 21, 2010 5:30 am, edited 2 times in total.
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