This Is MS Multiple Sclerosis Community: Knowledge & Support

I am pleased that these Neuros from Berlin are close to recommending D3 to a minimum blood level of 125mmol/L (they say 75-100mmol/L). I think they are not found all the published papers on this, maybe they should have read ThisIsMS. The paper is open access so you can read it at: http://www.epmajournal.com/content/4/1/4 . I printed the abstract below for those TiMS readers who do not want info overload.
I feel a letter to the author coming on.
MarkW

Can we prevent or treat multiple sclerosis by individualised vitamin D supply?
Jan Dörr1,2*, Andrea Döring1,2,3 and Friedemann Paul1,2
* Corresponding author: Jan Dörr jan-markus.doerr@charite.de
Author Affiliations
1 NeuroCure Clinical Research Center, Charité - Universitätsmedizin Berlin, Charitéplatz 1, Berlin, 10117, Germany
2 Clinical and Experimental Research Center for Multiple Sclerosis, Charité - Universitätsmedizin Berlin, Berlin, Germany
3 Current address: Department of Neurology, DIAKO, Flensburg, Germany
EPMA Journal 2013, 4:4 doi:10.1186/1878-5085-4-4
Abstract
Apart from its principal role in bone metabolism and calcium homeostasis, vitamin D has been attributed additional effects including an immunomodulatory, anti-inflammatory, and possibly even neuroprotective capacity which implicates a possible role of vitamin D in autoimmune diseases like multiple sclerosis (MS). Indeed, several lines of evidence including epidemiologic, preclinical, and clinical data suggest that reduced vitamin D levels and/or dysregulation of vitamin D homeostasis is a risk factor for the development of multiple sclerosis on the one hand, and that vitamin D serum levels are inversely associated with disease activity and progression on the other hand. However, these data are not undisputable, and many questions regarding the preventive and therapeutic capacity of vitamin D in multiple sclerosis remain to be answered. In particular, available clinical data derived from interventional trials using vitamin D supplementation as a therapeutic approach in MS are inconclusive and partly contradictory. In this review, we summarise and critically evaluate the existing data on the possible link between vitamin D and multiple sclerosis in light of the crucial question whether optimization of vitamin D status may impact the risk and/or the course of multiple sclerosis.

Keywords:
Multiple sclerosis; Vitamin D; Cholecalciferol; Prevention; Therapy; Risk factor; Supplementation; Personalised medicine; Targeted prevention; Tailored therapy

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Mark do all people with MS have low Vit D Blood levels?

Seems odd to me that we are the chosen ones with Blood levels of Vit D labelled as a factor in our disease co-incidences list?

Maybe it's not Vit D Blood levels that is the issue!

Maybe it's the production, storage, depletion or use of Vit D that is 'different or problematic' in PwMS!

Jumping to conclusions about increasing the Vit D Blood levels singularly is not the answer imo!

Nothing in our Health System/Functions are based on one factor, European Medicine has yet to learn this and accept it!

Synergy of combinations creates Health and Illness!

Just saying,
Nigel

Mark may have a different perspective on this, but I think in general, the answer is yes, at least at certain critical times. In some cases, it may well be that it is only the mother's vitamin D status during gestation that is the issue. It may be as some studies have shown, what your vitamin D levels are between birth and 10 years of age. There may also be seasonal deficiencies such that low levels in winter months may cause problems.


Nigel, not sure what you are saying here. Vitamin D deficiencies have been associated with a wide range of diseases. The form of the consequence of a vitamin D deficiency varies, but the underlying association with vitamin D is common. Further, as you suggest below, it may well not be the only factor. Two people with vitamin D deficiency may have very different outcomes. One, for example, is exposed to EBV or chlamydia pneumonia and the other is not. One gets MS, the other doesn't.


True, but our measure of the deficiency is the Vitamin D blood level. If with solar exposure or supplementation we still end up with low levels, then the problem is not the intake or production of vitamin D, but what happens to it.

It depends further on the adequacy of all the co-factors which vitamin D acts on. We have evidence that in some cancers, the enzyme that degrades vitamin D, 24Ohase, is so active that regardless of intake or production of vitamin D, it is rapidly degraded.

But we have to have some way of measuring what is going on and the vitamin D serum levels is a good starting point for this.


Really? Nothing can act alone? How far will you get with no oxygen? What about no water?

I think that we are slowly finding that sunlight is a third critical factor along with air and water. And to me, that makes evolutionary sense. Each is relatively abundant so it makes sense that we evolved to make use of these naturally abundant resources.

While we are not likely to get too far with just water and oxygen, we are not likely to even survive without each.

So yes, there are many factors to take into consideration. There is no question about that, but it does make sense to focus on some basics, not in isolation, but nevertheless critical in and of themselves, no?

Ed

Thank Ed ,
I always love to hear the impressions of my communications.

Ed I was looking at this from the point of view of adding when we assume there is a lack, not from the angle of taking way to see what is necessary to survive full stop!

The other part of your comment is of course spot on as always!

Just learned how to quote sections like this!


Nigel

I don't think we know when there is a "lack."

The need probably varies with what is going on in the body. What might be adequate at one point, may not be at another time.

Since there appears to be little risk of keeping the tank topped off, why not do that, even if it provides an excess of need at a particular time? The whole system is quite elegant with lots of mechanisms built into to degrade excess levels, to store an amount that is in excess of current requirements so that it is available later when there is a need for more than is available.

I hear you and ask what do we add to increase the Vit D levels, sun light, or zinc/copper and magnesium?

Unless we know why we lack it or use lots of it then how can we boost it if there is something hindering increases in Blood analysis?

It appears that supplementing may not increase the Blood levels, Jimmylegs did I get that right?

I have no problem with supplementing, I do it, I also believe there a learning opportunity when people like me can't increase to 'perceived' best levels!


Nigel

I have no expertise to answer this question, but my inclination would be to do what you are suggesting as a first step. Ensure that you are getting enough zinc and magnesium. I don't know about copper, but I do know that chocolate is a good source.

Have you run through calculations to determine if the amount of solar exposure and supplementations is in fact enough to raise your levels?

A standard formula for this is that 40IU/day should increase your 25(OH)D level by 1 nmol/L (0.4/ng/mL), though it should be noted that there is a dependency on your starting level. There is a nice table on all of this at Grass Roots Health.

Sorting it out beyond this seems more than difficult. You could have a vitamin D processing gene deficiency, but the only way I know that you can find that is with a genetic test.

It could also be that you are using more than normal amounts. Again, difficult to identify this other than to note that you are unable to increase your 25(OH)D level according to the standard formula.

And you could have things going on which are degrading vitamin D as happens when 24OHase is upregulated as is known to occur in at least some cancers and presumably other conditions. Since that process occurs within the cells, it isn't something you can measure in the blood to my knowledge.

Interesting info from our friends in Buffalo NY..................MarkW
J Neurol Neurosurg Psychiatry doi:10.1136/jnnp-2012-304661
Interdependence and contributions of sun exposure and vitamin D to MRI measures in multiple sclerosis
Robert Zivadinov1, Cierra N Treu2, Bianca Weinstock-Guttman3, Caitlin Turner2, Niels Bergsland1, Kerri O'Connor2, Michael G Dwyer1, Ellen Carl1, Deepa P Ramasamy1, Jun Qu2, Murali Ramanathan2,3
+ Author Affiliations
1Department of Neurology, Buffalo Neuroimaging Analysis Center, State University of New York, Buffalo, New York, USA
2Department of Pharmaceutical Sciences, State University of New York, Buffalo, New York, USA
3Department of Neurology, Multiple Sclerosis Center, State University of New York, Buffalo, New York, USA
Correspondence to Professor M Ramanathan, Department of Pharmaceutical Sciences, State University of New York, Buffalo, 355 Kapoor Hall, Buffalo, NY 14214-8033, USA; Murali@Buffalo.Edu
Received 24 November 2012
Revised 3 January 2013
Accepted 10 January 2013
Published Online First 5 February 2013
Abstract
Purpose To assess the relationships of sun exposure history, supplementation and environmental factors to vitamin D levels in multiple sclerosis (MS) patients and to evaluate the associations between sun exposure and MRI measures.
Methods This study included 264 MS patients (mean age 46.9±10 years, disease duration 14.6±10 years; 67.8% relapsing–remitting, 28% secondary progressive and 4.2% primary progressive MS) and 69 healthy controls. Subjects underwent neurological and 3 T MRI examinations, provided blood samples and answered questions to a structured questionnaire. Information on race, skin and eye colour, supplement use, body mass index (BMI) and sun exposure was obtained by questionnaire. The vitamin D metabolites (25-hydrox vitamin D3, 1, 25-dihydroxy vitamin D3 and 24, 25-dihydroxy vitamin D3) were measured using mass spectrometry.
Results Multivitamin supplementation (partial correlation rp=0.29, p<0.001), BMI (rp=−0.24, p=0.001), summer sun exposure (rp=0.22, p=0.002) and darker eye colour (rp=−0.18, p=0.015) had the strongest associations with vitamin D metabolite levels in the MS group. Increased summer sun exposure was associated with increased grey matter volume (GMV, rp=0.16, p=0.019) and whole brain volume (WBV, rp=0.20, p=0.004) after correcting for Extended Disability Status Scale in the MS group. Inclusion of 25-hydroxy vitamin D3 levels did not substantially affect the positive associations of sun exposure with WBV (rp=0.18, p=0.003) and GMV (rp=0.14, p=0.026) in the MS group.
Conclusions Sun exposure may have direct effects on MRI measures of neurodegeneration in MS, independently of vitamin D.

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Hello Nigel and Ed and other readers,
My findings in summary:
-PwMS probably have low blood levels of D3 and so do most of the population of the UK.
-PwMS with higher blood levels of D3 have slower progression than pwMS with lower D3 levels.
-D3 is cheap and easy to supplement so acheive a blood level above 125mmol/L, start with 5000iu/day.
-Check Zn, Mg, Ca, Se levels if D3 level does not rise with 5000iu/day.
-Increased sunlight exposure and natural sources of D3 & minerals are my preferred sources.
The rest of the picture I do not have sufficient data to arrive at rational answers. In my world (Oxford, England) getting regular year round sunshine is not possible (same for Nigel in NZ?) so supplements are required as I am not prepared to eat oily fish for most meals. For many questions, my answer answer is - I don't know. However, I am sure that it is economically rational to increase D3 in blood for all pwMS; families of pwMS who are considering reproducing; people who get CIS; people who get optic nerve problems; people who have EBV.
I have a theory on why MS and vit D3 are linked but it is too complex for a forum. (I have given it as part of a 120 min seminar).
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

Another factor:

http://abcnews.go.com/blogs/health/2013 ... e-warning/

My CSV Vit D3 bottle doesn't have the USP label, so I'll look for a brand that does have it.

Thanks HP.
This puts a whole new layer to the challenges of Vit D supps and the reasons for not being able to improve!
I wonder if it means don't trust the labels or only buy with labels?

Life's such a breeze ...................until...........................


Nigel

@nz yes some ppl apparently need to increase cofactors for better d3 absorption/retention from dietary and/or supplemental intakes. as far as i can tell it would also apply to efficiency of cutaneous synthesis of d3, since this process is known to become less efficient with age. so are things like serum zinc levels, and apparently zinc absorption/retention too.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I have been away for a few days and was mulling over this thread, so changed the title. Also we need to agree recommended levels for co-factors. However, the FIRST STEP is to take Vitamin D3, minimum level for pwMS is 125 nmol/L of 25-hydroxyvitamin D in blood (50ng/ml). My advice (edited 15 Feb 13 with new title) This level applies before and after de-stenosis, start with 5 to 10,000 IU a day of D3. It is very cheap and safe for adults.

The findings of fraudulant labels on vit D3 in USA is concerning for a medicinal product. In UK we are finding 'beef' products which in fact also contain horse, pig, chicken.................
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

i definitely learned about d3 long before magnesium or zinc, and in 2006 i would have agreed that a first step for ms patients would be to get d3 up into the 125-150 range. in fact, it WAS my first step, right after b12 failed to do its usual magic. by 2007/2008, i was learning how dangerous isolated d3 supplementation could be for my magnesium status. and it would be 2009 or thereabouts, before i would begin to understand the importance of zinc to d3 absorption. between them, magnesium and zinc are key to over 400 body functions. target levels for zinc 18-19 umol/L, for magnesium minimum 0.90-0.95 mmmol/L. very narrow bands within the established 'normal' range. usually nothing at all to do with ranges used at individual labs which tend to use population data from sick people, with no trimming of extreme high and low data points out beyond 2 standard deviations.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com