This Is MS Multiple Sclerosis Community: Knowledge & Support

Im on Helminthic Therapy since February 11 and had a top up in August.

I have only had one acute attack and that was ON in November 2010. Since then overall I have got much better but this maybe down to Rebif / Supplements / diet.

So to date no acute attacks. Do get some minor transient symptoms - slight blurring in left eye. Today my left arm feels strange but is quite funtional.

I have been taking vitamin D supplements for about six years since I was dx. I believe it has helped me. I take 6,000iu's a day, and I get my vitamin d level checked once a year. Everyone is a little different as to how much vitamin d they need so I recommend yearly testing. Optimal level of circulating vitamin D is between 100 and 150 nmol/l (nanomols per litre).

Hi VQ,

Here's a link to a thread about a recent vitamin D study where I gave my own personal experiences - lots & lots of them. My progression was very slow - until I started vit D.
general-discussion-f1/topic17545.html
And there are LOTS of vit D studies on Squiffy's original link – to the msrc website: http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334

And here's a quote from me on that thread:

As for the worms, no experience there. I still have trouble even reading about those here.

Good luck!

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

MS patients to be given vitamin D to test sun's effect on the condition



Patients with early-stage multiple sclerosis are to be given vitamin D supplements as part of a trial to determine if a lack of sunshine may contribute to the illness.

It has long been noted that incidences of MS increase the further away from the equator people are, although doctors are not sure whether the reasons are environmental or genetic, or a combination of both.

A previous study examined discrepancies between MS rates in Donegal, which has some of the lowest sunshine levels in Ireland and has high rates of MS, and Wexford, which is the sunniest part of the country and has lower levels of the disease. The study concluded that sunshine may play a role, but it may also be down to genetics.

Consultant neurologist Dr Chris McGuigan, who works in St Vincent’s Hospital, said the study, which is scheduled to begin before the end of the year, will be carried out to see if vitamin D supplementation can stop the next “event” or seizure.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

It is perhaps me. I will have my control blood tests in about 2 weeks.
I just have difficuilties with nausea after taking Zinc after lunch (25mg). I am fine taking 25 mg after dinner. I think I will try 50 mg in the evening only as I would like to funktion during the day as well. I teach 1 English lessen 3 times a week - my only job.
Erika

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Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

yep i was talking about you erika wow that's weird that only 25mg makes you nauseous. i definitely get sick from 100mg but i can take 50 no probs. sure try taking all 50 after dinner and see how it goes!

when i had some of my worst symptoms, i was taking vitamin d3 but no calcium, magnesium, or zinc. i gave myself a magnesium deficiency (i didn't know at the time so no bloodwork unfortunately) because of high dosing just d3. i was horribly sick from the d3 until i got on track with balancing it with other necessary minerals.

in hindsight i would say taking d3 did indeed increase my 'progression' but it was a reversible side effect of not taking it properly.

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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

It seems that 10,000 IUs of Vitamin d3 is the upper limit recommended for this supplement.

jackD

Am J Clin Nutr. 2007 Jan;85(1):6-18.

Risk assessment for vitamin D.

Hathcock JN, Shao A, Vieth R, Heaney R.

SourceCouncil for Responsible Nutrition, Washington, DC 20036-5114, USA. jhathcock@crnusa.org

Abstract
The objective of this review was to apply the risk assessment methodology used by the Food and Nutrition Board (FNB) to derive a revised safe Tolerable Upper Intake Level (UL) for vitamin D. New data continue to emerge regarding the health benefits of vitamin D beyond its role in bone. The intakes associated with those benefits suggest a need for levels of supplementation, food fortification, or both that are higher than current levels.

A prevailing concern exists, however, regarding the potential for toxicity related to excessive vitamin D intakes. The UL established by the FNB for vitamin D (50 microg, or 2000 IU) is not based on current evidence and is viewed by many as being too restrictive, thus curtailing research, commercial development, and optimization of nutritional policy. Human clinical trial data published subsequent to the establishment of the FNB vitamin D UL published in 1997 support a significantly higher UL. We present a risk assessment based on relevant, well-designed human clinical trials of vitamin D.

Collectively, the absence of toxicity in trials conducted in healthy adults that used vitamin D dose > or = 250 microg/d (10,000 IU vitamin D3) supports the confident selection of this value as the UL.

PMID: 17209171 [PubMed - indexed for MEDLINE]

i think it's really important to supplement d3 with care. i'd be curious to go back and review the duration of those trials in that meta-analysis.
10,000 IU is a logical upper limit, but in the absence of balanced mineral supplementation i think in time the wheels would come off.
i think i was only taking 4000IU per day when i ran into trouble, but the problems took a long time to manifest.

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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

With the discovery of regulatory T-cells whose function it is to regulate the immune system, it seems that there has been another recent discovery which explains how these regulatory T-cells work:

http://bloodjournal.hematologylibrary.org/content/112/8/3303.abstract

And here is a good graphic from this paper that gives a good description of this recent discovery:



To explain this graphic, the molecule at the left (IgG) represents an immune system antibody. These antibodies contain epitopes from antigens that are derived from pathogens. In laymens terms you can think of an antigen as a key chain and the epitopes as a key on the chain. The epitopes are use to sensitize immune cells to seek out the pathogens within the body once they have be activated by antigen presenting cells (the key has to fit the lock to initiate an immune response).

So anyway, it appears that within these antibodies there has been found Tregitopes that activate regulatory T-cells to shut down the immune response at an appropriate time.



But a key factor in this regulation is that there has to be regulatory T-cells (Tregs), and it appears that people with MS have a deficiency of the number or efficacy of these cells. And from the data I have provided in this post, Vitamin D appears to promote the development of Tregs.

High dose vitamin D does not appear any better than low doses for people with multiple sclerosis, according to an Australian study.

The preliminary study, which found supplements ineffective at reducing brain lesions, paves the way for a larger trial seeking definitive answers on whether high doses are beneficial, harmful or neutral.

The findings appear today in the journal Neurology....Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334

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The Multiple Sclerosis Resource Centre

Squiffy's House of Fun - Laughter for Multiple Sclerosis

small study, short period of time, using D2 supplements (not D3), measure is number of lesions not relapses or changes in EDSS score.

still probably warrants more research.

also not in combination with complementary minerals

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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

Yeah, it probably takes at least a month to start to raise your blood levels if not more. And it may probably take 3 months at target blood levels to begin to have an impact. Also the 6,000 iu compared 1,000 iu is not as big of a difference compared to other small trials which averaged between 10k and 14k per day. And this used D2. Most drugs whether it is Rebif, Copaxone, BG 12, etc take at leat 3 to six months to begin to work. In MS, you really need at least a year long trial, preferably two. This is a good phase I, saftey and tolerability but other than that, we need a large phase II/III trial with probably at the very minimum 60 people in each treatment arm, but preferablly closer to 100 and lasting minimal of a year. And I would use about 10,000iu's per day. No use in doing a trial (other than safety and tolerability) if don't have enough statistical power to answer your question one way or another.

I agree that the trial was too short, why D2 and not D3? The dosage is not the important part it is the level of vitamin D in ones body that matters. Hate to say it was a bad trial because it did not produce the results we would like, but it just did not seem like a well structured trial.

Correction, they did use 12,000iu total. And they did measure blood levels. The main criticism of study length and sample size still stands, but a little disappointing. I do know that there is a properly powered trial with vitamin D as an add on to interferon treatment, but because they are doing it right, the results won't be available for a few years.

http://www.medpagetoday.com/clinical-context/MultipleSclerosis/29235