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CureOrBust wrote:

vilnietis wrote:Enhancing lesions have 40% of chance becoming black holes in the end

I searched for this number, and had no luck. Could you please direct me to where this statistic was taken from?

I read it in a book "Multiple Sclerosis Therapeutics" by Jeffrey A. Cohen, Richard A. Rudick. Page 321:
Typically, about 40% of new MS lesions result in persistent T1 black holes, which indicate more severe tissue destruction.

I don't want to start discussion about lesions. I'm not a radiologist or researcher, I guess you CureOrBust are not too. And lesions doesn't matter in the end to a patient, what matter is how to stop MS. Yesterday in the morning I entered in google search such keywords:
"vitamin D" "high dose" "multiple sclerosis"
I was surprised how many sites (found more than 100) published articles in the past 24 hours with a headline "High dose vitamin D could treat multiple sclerosis, scientists find", i.e.:
http://www.telegraph.co.uk/news/science ... -find.html

So we started discussion with a people, who takes high vitamin D doses, in facebook about this topic. I liked the comment from one guy, he said "That's been going for yrs.". I don't know, I'm newcomer. But this guy probably told the true, some people stopped MS with high dose vitamin D for many years now and our medical institutions just ignoring it, they don't care

vilnietis wrote:I read it in a book "Multiple Sclerosis Therapeutics" by Jeffrey A. Cohen, Richard A. Rudick. Page 321:Typically, about 40% of new MS lesions result in persistent T1 black holes

Thanks. I'll see if I can find what their source is.

vilnietis wrote:Yesterday in the morning I entered in google search such keywords:
"vitamin D" "high dose" "multiple sclerosis"
I was surprised how many sites (found more than 100) published articles in the past 24 hours with a headline "High dose vitamin D could treat multiple sclerosis, scientists find"

Medicine is a science. Do not use plain old google to find anything. You will find anything and everything you look for. Google takes pride in being able to get hits on ANY search. For example, typing in "arsenic as a cure for multiple sclerosis" returned over 100,000 "hits"

Also, a "published article" is not simply something someone puts up on the internet. Any pre-teen with an internet connection and "publish" any old rubbish they wish. In medicine, when someone says "published" they mean printed / published in/by a respected peer reviewed periodical. Use Google scholar to search these (and turn off patents) Anything in the papers is simply to draw in readers to view the advertising.

vilnietis wrote:So we started discussion with a people, who takes high vitamin D doses, in facebook about this topic. I liked the comment from one guy, he said "That's been going for yrs.". I don't know, I'm newcomer. But this guy probably told the true, some people stopped MS with high dose vitamin D for many years now and our medical institutions just ignoring it, they don't care

I am happy for individuals that report good results. However, these numbers fade to insignificance when you factor in the millions of people who have MS.

Saying the "medical institutions are just ignoring it, they don't care" is simply wrong and unjustified, and as such does not help spread the word on Vit D, as it simply presents you as someone with little consideration for others (ie the people who treat MS and DO care).

CureOrBust wrote:

vilnietis wrote:I read it in a book "Multiple Sclerosis Therapeutics" by Jeffrey A. Cohen, Richard A. Rudick. Page 321:Typically, about 40% of new MS lesions result in persistent T1 black holes

Thanks. I'll see if I can find what their source is.

I think the writer of the book was a playing a little fast and loose with the quotes. I cannot see if the following is the actual paper they are referencing (as I do not have the book) however, I did find the following published article, which references another article.
http://www.ncbi.nlm.nih.gov/pmc/article ... 484079.pdf (Bottom left on page 4)

Finally, less than 40% of these lesions evolve into persistent or chronic black holes over a 6-month period, which correlate pathologically with permanent demyelination and severe axonal loss (Figures 4 and 5) [Sahraian et al. 2010]

CureOrBust wrote:I am happy for individuals that report good results. However, these numbers fade to insignificance when you factor in the millions of people who have MS.

1 person (me) could be exception that doesn't prove anything, 2 persons from 2 (I know one girl personally, who does equally great on high vitamin D dose) is a tendency already, and how would you call more than 10,000 people in a group, who finds experience similar to mine? I would call it "works in practice" ;)

CureOrBust wrote:Saying the "medical institutions are just ignoring it, they don't care" is simply wrong and unjustified, and as such does not help spread the word on Vit D, as it simply presents you as someone with little consideration for others (ie the people who treat MS and DO care).

After I quit REBIF, suddenly I'm left alone to deal with my MS. My neurologist is not interested in my condition anymore, even though I proposed to come every 3 month to double-check and do neurological examination. Of course I informed that I'm going to take high vitamin D doses. The last sentence from neurologist was "Please sign here." and I'm not a patient anymore. Maybe I should use a word "customer" here instead of "patient". So sorry to say CureOrBust, but I have a full right to say "They don't care".

vilnietis wrote:1 person (me) could be exception that doesn't prove anything, 2 persons from 2 (I know one girl personally, who does equally great on high vitamin D dose) is a tendency already, and how would you call more than 10,000 people in a group, who finds experience similar to mine? I would call it "works in practice" ;)

In medical research, two numbers are normally quoted. The % of responders AND the confidence interval. This number is normally aimed for >95% (CI of 0.05) With the numbers you are talking, the mathematics of your confidence interval would be approaching if not 0%.

vilnietis wrote:After I quit REBIF, suddenly I'm left alone to deal with my MS. My neurologist is not interested in my condition anymore, even though I proposed to come every 3 month to double-check and do neurological examination.

YOUR neurologist. ie only 1. You have the full "rights" to whatever you want to say or believe.

Do you believe the main concern of PwMS out there is .. confidence interval?

vilnietis wrote:Do you believe the main concern of PwMS out there is .. confidence interval?

The Confidence interval is a statement of statistical fact on weather a treatment actually works (in combination withe efficacy). So, YES PwMS are concerned about if a treatment actually works.

Your CI is below. Now, the study used ONLY 10,400IU of vitamin D. We can just imagine what dramatic effect it would have been if they had used 60,000IU or more ;)
I'm taking 70,000IU. Would love to participate in a similar study

ABSTRACT

Objective: To study the safety profile and characterize the immunologic effects of high- vs low-dose cholecalciferol supplementation in patients with multiple sclerosis (MS).

Methods: In this double-blind, single-center randomized pilot study, 40 patients with relapsing-remitting MS were randomized to receive 10,400 IU or 800 IU cholecalciferol daily for 6 months. Assessments were performed at baseline and 3 and 6 months.

Results: Mean increase of 25-hydroxyvitamin D levels from baseline to final visit was larger in the high-dose group (34.9 ng/mL; 95% confidence interval [CI] 25.0–44.7 ng/mL) than in the low-dose group (6.9 ng/mL; 95% CI 1.0–13.7 ng/mL). Adverse events were minor and did not differ between the 2 groups. Two relapses occurred, one in each treatment arm. In the high-dose group, we found a reduction in the proportion of interleukin-17+CD4+ T cells (p = 0.016), CD161+CD4+ T cells (p = 0.03), and effector memory CD4+ T cells (p = 0.021) with a concomitant increase in the proportion of central memory CD4+ T cells (p = 0.018) and naive CD4+ T cells (p = 0.04). These effects were not observed in the low-dose group.

Conclusions: Cholecalciferol supplementation with 10,400 IU daily is safe and tolerable in patients with MS and exhibits in vivo pleiotropic immunomodulatory effects in MS, which include reduction of interleukin-17 production by CD4+ T cells and decreased proportion of effector memory CD4+ T cells with concomitant increase in central memory CD4+ T cells and naive CD4+ T cells.

Classification of evidence: This study provides Class I evidence that cholecalciferol supplementation with 10,400 IU daily is safe and well-tolerated in patients with MS and exhibits in vivo pleiotropic immunomodulatory effects.

http://www.neurology.org/content/early/ ... 0000002316

I see that the now food DHA 500 is recommended. Is the Vitamin D from now food also recommended? Or what type is?

Thanks in advance!

vilnietis wrote:Your CI is below.

The CI provided in that one study, is specifically for that one study, not for everything that relates to D3. That is not how study results and statistics work.

Revolit wrote:I see that the now food DHA 500 is recommended. Is the Vitamin D from now food also recommended? Or what type is?

My understanding is that it is simply the dose of DHA. There are cheaper alternatives to the Now Foods product.

Reading the OP, it appears to me that the claims for Coimbra Protocol appear to be aimed at RRMS. Are there any claims for the other forms of MS?

Revolit wrote:I see that the now food DHA 500 is recommended. Is the Vitamin D from now food also recommended? Or what type is?

Thanks in advance!

Form of vitamin D is more important than a brand. Vitamin D - go with oil capsules. Oil capsules has better absorption rate compared to dry form capsules. I have tried both forms of vitamin D - dry and oil. Both worked well for me to increase vitamin D levels. How well vitamin D will be absorbed depends on your gut condition, how well it will be metabolized to active form depends on liver and kidney condition ;)
Similar story with a fish oil, there are plenty of information regarding quality .. just google it I think you can't go wrong with now food ;)

CureOrBust wrote:Reading the OP, it appears to me that the claims for Coimbra Protocol appear to be aimed at RRMS. Are there any claims for the other forms of MS?

The aim is to stop progression. Doctors says that it works for all types. I became friends with couple of persons here in Europe, who have progressive forms and takes high doses. Persons, who are just diagnosed recently with progressive form, are doing well and are optimistic. Now they are improving bit by bit. I don't have progressive type of MS, but from a readings I have impression that people are progressing even during the first year. So it seems to me that vitamin D high doses helps them as well.
RRMS of course responds much better. Anyway time will give more answers, as most in Europe I know, are only in a second year with high doses ;)

V, after 17 months on the protocol I am beginning to see positive results. Perhaps it is because I have increased my dosage to 115,000iu. I am SPMS and nearly bedridden.

vilnietis wrote:I think you can't go wrong with now food ;)

I have tried a couple of brands of Fish oil with 500mg DHA. If you are sensitive to a "fishy smell" then I would not recommend the Now Foods brand.

A brand we have in Australia (Blackmores Brain) is expensive, but they are scented with Vanilla, which covers the fishy smell completely. Recently I tried a Life Extension brand (I got mine from iHerb http://www.iherb.com/Life-Extension-Sup ... gels/40289) and they were in a black capsule and had no fish smell; at least this one pack I got, did not. Next time I went to order they were out of stock so I got the Now Foods brand, and its "fishy".

CureOrBust wrote:A brand we have in Australia (Blackmores Brain) is expensive, but they are scented with Vanilla, which covers the fishy smell completely. Recently I tried a Life Extension brand (I got mine from iHerb http://www.iherb.com/Life-Extension-Sup ... gels/40289) and they were in a black capsule and had no fish smell; at least this one pack I got, did not. Next time I went to order they were out of stock so I got the Now Foods brand, and its "fishy".

If your fish oil tastes excessively fishy, then it may have gone rancid. I keep mine in the fridge. I take 6 capsules at a time and sometimes they break open before I swallow them. There's a slight fish taste to them, but they're not offensive. I've used the Now Foods Ultra Omega capsules and consumed the oil directly by squeezing it out of the capsule. There is a fish taste, but it's not a rancid one. However, leave some oil exposed to air for 10 minutes or so and it will smell like the floor of a fish market due to oxidation. If you can't determine a marked difference between the oil fresh from the capsule and oil that's been exposed for 10-20 minutes, then the capsules have gone bad (or you have a really bad cold). Consuming rancid fats is quite harmful for your health (they're highly proinflammatory) and omega-3's are particularly sensitive to oxidation. This is also why one should never buy unrefrigerated flax oil.

NHE wrote:If your fish oil tastes excessively fishy, then it may have gone rancid. I keep mine in the fridge. I take 6 capsules at a time and sometimes they break open before I swallow them. There's a slight fish taste to them, but they're not offensive.

They're not out of the ordinary type of "fishy", I'm just a little sensitive to smells. But you did remind me of my old trick of keeping them in the freezer, thanks.