This Is MS Multiple Sclerosis Community: Knowledge & Support

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 3 March 13 with new title) This level applies before and after de-stenosis:
- Take 5 to 10,000 IU a day of D3. It is very cheap and safe for adults.
- Target level (minimum for pwMS) is 125 nmol/L of 25-hydroxyvitamin D in blood (50ng/ml).
This thread contains lots of info on this subject.
I try to answer questions on D3 asked on this thread.
MarkW

How the thread started:
There was a thread 'Stop Vitamin D'
http://www.thisisms.com/ftopict-14540-.html
I gave advice to take Vit D3 from my memory as I had looked into D3 some years ago. To update myself I decided to do some continuing professional development (CPD) on the subject of vit D and MS.

My advice has been supported by my reading so I have summarised this:

- Take 5 to 10,000 IU a day of D3. It is safe for adults.

- Target range is 100 to 150 nmol/L of 25-hydroxyvitamin D in blood (measure in Feb-Mar). Lifeguards in St. Louis have 150 nmol/L naturally.

I am not a person to give you lots of references so here are two:
- Lancet Neurology June 2010 p555 - Leading Edge. Short 1 page summary, easy reading.
- Lancet Neurology June 2010 p599-612 - Vitamin D and Multiple Sclerosis. Review from Harvard with 196 references, heavy material.

I note that Vitamin D is important for many areas of health, including vascular health, which has already been discussed on the forum.

So if you have MS and do not have good blood levels of vit D, why are you not taking vit D3 ??

My advice - take one 5000 IU capsule a day until Feb/Mar next year, then get tested. I take D3 as Cholecalciferol in a softgel capsule. This is the most bioavailable form.

Part of my CPD is to record who used my advice, so please let me know what you think of and do with this information.

Kind regards,

MarkW

_________________
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,

I do agree with the value of vit D.

I'm taking at the moment a higher dosis than the one you suggest (5,000iu a day) to get rid of my vit D deficiency.

A nutritionist has tested my vit D and has given me very specific guideliness on how to increase the dosis of Vit D, for how long and how much I should I take once I reach the optimum level of vit D.

FYI, the recommended daily intake of Vit D and calcium were revised yesterday in the USA and Canada.

For Vit D the recommended daily intake for adults was trippled from 200iu to 600iu.

The acceptable upper range of daily intake of Vit D was also increased from 2000iu to 4000iu.

These recommendations were taken into account to have bone health only.

The panel that modified the recommended intake reviewed 10,000 articles on the value of vit D and found no conclusive evidence that increasing vit D has benefits for other diseases (cancer, autoimmune diseases). I disagree with the decision of this panel, and I think many neurologist and other docs too.

The panel could not agree on the optimum level of vit D either. For that they'll have another panel which will look further into it.

As for calcium, the panel found out that most people are taking enough calcium through diet and no further supplements are required. Only teenager girls might not be taking enough calcium.

Further info on the new recommended daily intake of Vit D and calcium at:
Wall Street journal:
http://tinyurl.com/2bmxjwt

The New York Times
http://tinyurl.com/29ly594

Good books on vit D for layman:

Vitamin D solution, by Dr Holick

Vitamin D revolution, by Dr Soram Khalsa

_________________
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

Statement of Vit D council regarding the revised recommended daily intake of Vit D3:

"After 13 year of silence, the quasi governmental agency, the Institute of Medicine's (IOM) Food and Nutrition Board (FNB), today recommended that a three-pound premature infant take virtually the same amount of vitamin D as a 300 pound pregnant woman...

The FNB also reported that vitamin D toxicity might occur at an intake of 10,000 IU/day (250 micrograms/day), although they could produce no reproducible evidence that 10,000 IU/day has ever caused toxicity in humans and only one poorly conducted study indicating 20,000 IU/day may cause mild elevations in serum calcium, but not clinical toxicity...

Disturbingly, this FNB committee focused on bone health, just like they did 14 years ago. They ignored the thousands of studies from the last ten years that showed higher doses of vitamin D helps: heart health, brain health, breast health, prostate health, pancreatic health, muscle health, nerve health, eye health, immune health, colon health, liver health, mood health, skin health, and especially fetal health...

Hence, if you want to optimize your vitamin D levels — not just optimize the bone effect — supplementing is crucial. But it is almost impossible to significantly raise your vitamin D levels when supplementing at only 600 IU/day (15 micrograms)...

Finally, the FNB committee consulted with 14 vitamin D experts and — after reading these 14 different reports — the FNB decided to suppress their reports...

My advice, especially for pregnant women: continue taking 5,000 IU/day until your 25(OH)D is between 50–80 ng/mL (the vitamin D blood levels obtained by humans who live and work in the sun and the mid-point of the current reference ranges at all American laboratories)...Dr John Jacob Cannell "

More on:
http://www.vitamindcouncil.org/vdc-stat ... port.shtml

_________________
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

Here an interesting article on vit D:

Dec 02 (NaturalNews): Earlier this week, the Institute of Medicine finally got around to reluctantly admitting that people need more vitamin D. Raising the daily intake recommendation from 200 IUs to 600 IUs still leaves most people pitifully vitamin D deficient, and a flood of scientific research that has emerged over the last four years reveals that vitamin D deficiency causes cancer, osteoporosis, depression, diabetes, heart disease, kidney disorders and depression.

In other words, vitamin D deficiency is the cornerstone of the pharmaceutical industry's profit machine.

More on: http://www.naturalnews.com/030598_vitam ... z16wzzSH9C

I'm not sure whether indeed one can claim vit D deficiency can cause cancer as such. But I've seen studies that have found adequate levels of Vit D can reduce the risk of developing cancer by 50%. I read that in Vit D revolution book.

_________________
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

I'm quite sure the only reason they even looked at this and raised the levels, was the spike in people being tested for d levels. Now they can comfortably deny these tests because the doctors can use this as there new bench mark. It's all about the denial of services in this corrupt system we tout as one of the best in the world.

The form matters as well. Despite supplements my daughter and I were still deficient till we switched to liquid drops.

For people wanting research detail on vit D and MS.
MarkW

J Neuroimmunol. 2010 Dec 24. [Epub ahead of print]

Vitamin D has a direct immunomodulatory effect on CD8+ T cells of patients with early multiple sclerosis and healthy control subjects.
Lysandropoulos AP, Jaquiéry E, Jilek S, Pantaleo G, Schluep M, Du Pasquier RA.

Service of Neurology, Department of Clinical Neurosciences, Centre Hospitalier Universitaire Vaudois, Lausanne, Switzerland.

Abstract
Little is known on a putative effect of vitamin D on CD8+ T cells. Yet, these cells are involved in the immmunopathogenesis of MS. We assessed the cytokine profile of EBV-specific CD8+ T cells of 10 early MS patients and 10 healthy control subjects with or without 1,25(OH)(2)D(3) and found that, with 1,25(OH)(2)D(3), these cells secreted less IFN-γ and TNF-α and more IL-5 and TGF-β. CD4+ T cell depletion or even culture with CD8+ T cells only did not abolish the immunomodulatory effect of 1,25(OH)(2)D(3) on CD8+ T cells,
suggesting that 1,25(OH)(2)D(3) can act directly on CD8+ T cells.

Copyright © 2010 Elsevier B.V. All rights reserved.
PMID: 21186064 [PubMed - as supplied by publisher]

-------------------------------------------------

_________________
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

fyi my dose response to liquid d3 ***tripled*** after i identified and corrected my zinc deficiency.

my intent was to normalize my zinc level, to take it from the ms part of the normal range, to the 'healthy control' part of the normal range.

i was hoping to simultaneously correct my serum uric acid level from ms range to healthy control range, by providing extra zinc to my liver so it could complete the urea cycle properly (convert ammonia to urea). it worked. zinc status and uric acid status do seem to be linked.

the change in my D3 absorption was a side benefit of the zinc/uric acid experiment.

after fixing my zinc, at one point my d3 shot up dangerously to 271 nmol/L when what i was taking at the time should have gotten me up to about 150 nmol/L (only when i was zinc deficient, as it turned out...)

i am much more careful with my d3 intake now that i am zinc replete.

one other benefit of zinc repletion is reducing iron dysregulation and deposition - i've posted on that elsewhere so if you have not seen that and care to read up, it should be an easy search

_________________
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

Is taking supplements necessary, or is just getting more sun a viable option? If you get a lot of sun in the spring/summer will that carry you through the rest of the year? Is laying in a tanning bed the same thing or not? Sorry for the basic questions, I know nothing about this topic.

Jimmylegs posted:
"one point my d3 shot up dangerously to 271 nmol/L when what i was taking at the time should have gotten me up to about 150"
Who told you that 271 is dangerous ? I have not seen evidence that it is.
My rule of thumb advice is:
- take one 5000 IU capsule a day for next 3 winter months, then get tested.
Adsorption of many vitamins and minerals are impacted by each other and diet, so levels are impossible to predict accurately.

Rokkit asks if supplements are necessary ?
MarkW: it depends where you live and your lifestyle. Target range is 100 to 150 nmol/L of 25-hydroxyvitamin D in blood (measure in Jan - Apr in North). I read that lifeguards in St. Louis have 150 nmol/L naturally but I guess that is not a typical lifestyle for pwMS.

MarkW

_________________
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

SOrry if this was asked before, but what exactly is the difference between D and D3?

i read those living at the equator get 14,000 iu a day from the sun. i am sure in the north we don't get enough so i supplement.

The UK's MS Trust just posted this. MarkW

High dose vitamin D supplements evaluated
There has been a great deal of interest in the role played by vitamin D, which is manufactured by the skin when it is exposed to sunlight, in MS. The majority of studies have focused on the role of vitamin D as a protective agent against the development of MS but more recently research has suggested that low vitamin D levels may be associated with increased risk of relapses and greater disability.

This study tested the safety of a high dose (20,000IU/d) of vitamin D3 for 12 weeks in 15 people with relapsing remitting MS. This dose of vitamin D3 was well tolerated and did not affect calcium metabolism. vitamin D levels increased from an average of 50 nmol/L (which are generally considered to be insufficient levels in the general population) at the beginning of the study to 380 nmol/L (optimal levels) at week 12. Changes in immmune cell levels and certain cytokines, mediators of the immune response, supported an immunomodulatory action for vitamin D3. The study provides important safety data to support the use of high doses of vitamin D3 in future clinical trials.

Smolders J, Peelen E, Thewissen M, et al.
Safety and T cell modulating effects of high dose vitamin d(3) supplementation in multiple sclerosis.
PLoS One. 2010 Dec 13;5(12):e15235.

_________________
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

If you want to study the details................MarkW

PLoS One. 2010 Dec 13;5(12):e15235.

Safety and T cell modulating effects of high dose vitamin d(3) supplementation in multiple sclerosis.
Smolders J, Peelen E, Thewissen M, Cohen Tervaert JW, Menheere P, Hupperts R, Damoiseaux J.

School for Mental Health and Neuroscience, Maastricht University Medical Center, Maastricht, The Netherlands.

Abstract
BACKGROUND: A poor vitamin D status has been associated with a high disease activity of multiple sclerosis (MS). Recently, we described associations between vitamin D status and peripheral T cell characteristics in relapsing remitting MS (RRMS) patients. In the present study, we studied the effects of high dose vitamin D(3) supplementation on safety and T cell related outcome measures.

METHODOLOGY/PRINCIPAL FINDINGS: Fifteen RRMS patients were supplemented with 20 000 IU/d vitamin D(3) for 12 weeks. Vitamin D and calcium metabolism were carefully monitored, and T cell characteristics were studied by flowcytometry. All patients finished the protocol without side-effects, hypercalcaemia, or hypercalciuria. The median vitamin D status increased from 50 nmol/L (31-175) at week 0 to 380 nmol/L (151-535) at week 12 (P<0.001). During the study, 1 patient experienced an exacerbation of MS and was censored from the T cell analysis. The proportions of (naïve and memory) CD4(+) Tregs remained unaffected. Although Treg suppressive function improved in several subjects, this effect was not significant in the total cohort (P = 0.143). An increased proportion of IL-10(+) CD4(+) T cells was found after supplementation (P = 0.021). Additionally, a decrease of the ratio between IFN-γ(+) and IL-4(+) CD4(+) T cells was observed (P = 0.035).

CONCLUSION/SIGNIFICANCE: Twelve week supplementation of high dose vitamin D(3) in RRMS patients was well tolerated and did not induce decompensation of calcium metabolism. The skewing towards an anti-inflammatory cytokine profile supports the evidence on vitamin D as an immune-modulator, and may be used as outcome measure for upcoming randomized placebo-controlled trials.

TRIAL REGISTRATION: Clinicaltrials.gov NCT00940719.

PMID: 21179201 [PubMed - in process]PMCID: PMC3001453 Free PMC Article

_________________
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

More reasons to take Vit D from the folks at Buffalo.
MarkW

Brief summary: This interesting imaging study recruited 193 patients with MS and aimed to explore the relationship between blood levels of vitamin D metabolites and clinical disability and changes on brain MRI.

The authors conclude that Vitamin D metabolites have protective associations with disability and brain atrophy in MS. In particular, they feel the results indicate strong associations for the 24, 25(OH)(2)VD(3) metabolite, which has not been extensively investigated in MS patients.

For the detail - Abstract:
J Neurol Neurosurg Psychiatry. 2011 Feb;82(2):189-95. Epub 2010 Nov 3.
Vitamin D metabolites are associated with clinical and MRI outcomes in multiple sclerosis patients.
Weinstock-Guttman B, Zivadinov R, Qu J, Cookfair D, Duan X, Bang E, Bergsland N, Hussein S, Cherneva M, Willis L, Heininen-Brown M, Ramanathan M.

Department of Pharmaceutical Sciences, State University of New York, Buffalo, NY 14260, USA.

PURPOSE: The associations between vitamin D and MRI measures of brain tissue injury have not been previously investigated in multiple sclerosis (MS). This research evaluates the significance of vitamin D and its active metabolites in brain tissue injury and clinical disability in MS patients.

METHODS: The study population consisted of 193 MS patients (152 women and 41 men; mean age 46.1 (SD 8.4) years; disease duration 13.8 (SD 8.4) years). Serum levels of 25-hydroxyvitamin D(3) (25(OH)VD(3)), 25-hydroxyvitamin D(2) (25(OH)VD(2)), 1α, 25-dihydroxyvitamin D(3) (1, 25(OH)(2)VD(3)) and 24(R), 25-dihydroxyvitamin D(3) (24, 25(OH)(2)VD(3)) were measured using a novel capillary liquid-chromatography-mass spectrometry method. Disability was assessed with the Expanded Disability Status Scale (EDSS) and the MS Severity Scale (MSSS). MRI measures included T2 lesion volume (LV), T1-LV and brain parenchymal fraction. The associations between deseasonalised levels of vitamin D metabolites and clinical and MRI measurements were assessed using regression analyses.

RESULTS: Lower deseasonalised levels of total 25(OH)VD (p=0.029), 25(OH)VD(3) (p=0.032) and 24, 25(OH)(2)VD(3) (p=0.005) were associated with higher MSSS. Similarly, lower deseasonalised levels of 24, 25(OH)(2)VD(3) (p=0.012) were associated with higher EDSS. Higher values of the 25(OH)VD(3) to 24, 25(OH)(2)VD(3) ratio were associated with higher MSSS (p=0.041) and lower brain parenchymal fraction (p=0.008).

CONCLUSIONS: Vitamin D metabolites have protective associations with disability and brain atrophy in MS. In particular, the results indicate strong associations for the 24, 25(OH)(2)VD(3) metabolite, which has not been extensively investigated in MS patients.

PMID: 21047880 [PubMed - in process]

_________________
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