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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 11:49 am
by NZer1
Mark are there studies that show that PwMS improve when they have your protocol?

And on that note what are the improvements you personally have achieved?

Does changing the outcome of a D3 test change symptoms or only the test results?

There are lots of studies that say that people in general have differing levels of serum D3, but as yet there aren't any results from research showing 'how and why' taking a D3 supplement has a flow on effect particularly for a disease that waxes and wanes like MS or other immune system dysfunctions.

What test could 'prove' that D3 supplementing has a symptomatic of curative effect?

There are to many variables to give this assumption according to the D3 study reviewers, peer reviewers. If a study participant becomes aware that there are possible deficiencies of elements, vitamins and minerals and that is why they are being tested, the average study participant changes other things in their diet at the same time which throws the research data or mathematical assumptions.

So that leads me to ask if you Mark changed anything else when you started supplementing D3?

Science as always,
;)
Nigel

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 12:12 pm
by MarkW
NZer1 wrote:Mark are there studies that show that PwMS improve when they have your protocol?
Science as always, ;)
Nigel
The question is one of economics given the scientific evidence. The 5 year study shows that pwMS with higher vit D3 levels showed "over the next 4 years, markedly lower levels of MS activity and disability progression than those with lower levels.”. For a supplement (which costs a few pence per day to buy) pwMS have a simple choice:
1-take 5,000-10,000 IU day to get to 150-200nmol/L - MarkW's balance of probability recommendation.
2-take no D3 until no doubts remain on D3 and large costly studies conducted - NZer1 appears to suggest this.
The 5 year study shows a very positive effect for D3. The question is spend a few pence a day on D3 or wait until no doubts remain for this safe dose of D3.
MarkW

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 12:37 pm
by THX1138
1-take 5,000-10,000 IU day to get to 150-200nmol/L - MarkW's balance of probability recommendation.
I did exactly that for about two years and my spacticity got so bad I could hardly walk.
Only through quitting the D and supplementing heavily for over a year with oral and transdermal magnesium have things been improving.

THX1138

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 3:46 pm
by NZer1
I've been taking 50,000 iu of D3 every 5 days for over a year, no improvements rather a continued steady decline, so I wonder why this isn't working for me Mark!

The ANZ study of Vit D supplementation so far has not shown any improvements and their data will be available in time. The Neuro's in control of the study are confused by the outcomes to date when the literature says the opposite should be true!

So Mark why does this occur with your protocol?

May Science get the better of us,
;)
Nigel

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 5:14 pm
by muse
MarkW wrote:Unfortunately Muse some posters are hijacking my Vit D3 thread with their ideas on Mg. I know that many minerals are important but it is virtually impossible to measure accurately the needs of the human body. I suggest taking a low dose water soluble multi-mineral and then letting the body choose what it needs and excrete the rest. This approach is widely used across the globe. Have you come across problems in pwMS when using a multi-mineral????
MarkW
I’m not a friend of multi-minerals, not at all. I’m a friend of proper testing of mineral (Mg-RBC, HTMA) or Vitamin deficiencies before giving dosage recommendation like you do and I’m not going to post on this thread either because I would “hijack” it with my weird ideas of real science.;-)
Get proper testing first otherwise it will become very, very dangerous, NO joke or sarcasm!

Want to find out the true status of your active “Vitamin”-D and bypass BIG-Pharma ("Vitamin-D Council") brainwash? https://www.facebook.com/notes/arne-kam ... 9175731987

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Wed Apr 09, 2014 7:08 pm
by jimmylegs
The biggest problem for pwMS is low vitamin D3 not magnesium or any another mineral. The scientific evidence shows this
nope and nope.
recall http://www.thisisms.com/forum/chronic-c ... ml#p223624
Assessment of serum magnesium, copper, and zinc levels in multiple sclerosis (MS) patients
http://ijpbs.mazums.ac.ir/browse.php?a_ ... lc_lang=en
Mean serum level of magnesium was 1.87 ± 0.37, copper 110.7 ± 19.5, and zinc 85.4 ± 13.5 in patients (control group), and 2.22 ± 0.24, 133.7 ± 13.4, and 110 ± 8.3 respectively in case group. This difference is statistically significant (P< 0.001).
Magnesium, vitamin D status and mortality: results from US National Health and Nutrition Examination Survey (NHANES) 2001 to 2006 and NHANES III
http://www.biomedcentral.com/1741-7015/11/187/abstract
High intake of total, dietary or supplemental magnesium was independently associated with significantly reduced risks of vitamin D deficiency and insufficiency respectively. Intake of magnesium significantly interacted with intake of vitamin D in relation to risk of both vitamin D deficiency and insufficiency. Additionally, the inverse association between total magnesium intake and vitamin D insufficiency primarily appeared among populations at high risk of vitamin D insufficiency. Furthermore, the associations of serum 25(OH)D with mortality, particularly due to cardiovascular disease (CVD) and colorectal cancer, were modified by magnesium intake, and the inverse associations were primarily present among those with magnesium intake above the median.

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Thu Apr 10, 2014 2:52 am
by jimmylegs
re the jan 2014 study:
Vitamin D as an Early Predictor of Multiple Sclerosis Activity and Progression
http://archneur.jamanetwork.com/article ... feed_posts
Objectives To determine whether serum concentrations of 25-hydroxyvitamin D (25[OH]D), a marker of vitamin D status, predict disease activity and prognosis in patients with a first event suggestive of MS (clinically isolated syndrome).
Design, Setting, and Participants The Betaferon/Betaseron in Newly Emerging multiple sclerosis For Initial Treatment study was a randomized trial originally designed to evaluate the impact of early vs delayed interferon beta-1b treatment in patients with clinically isolated syndrome. Serum 25(OH)D concentrations were measured at baseline and 6, 12, and 24 months. A total of 465 of the 468 patients randomized had at least 1 25(OH)D measurement, and 334 patients had them at both the 6- and 12-month (seasonally asynchronous) measurements. Patients were followed up for 5 years clinically and by magnetic resonance imaging. ... values greater than or equal to 50 nmol/L (20 ng/mL) at up to 12 months predicted lower disability (Expanded Disability Status Scale score, −0.17; P = .004) during the subsequent 4 years.
Conclusions and Relevance Among patients with MS mainly treated with interferon beta-1b, low 25(OH)D levels early in the disease course are a strong risk factor for long-term MS activity and progression.
Vitamin D May Slow Multiple Sclerosis, Study Suggests
But whether MS patients should take supplements is subject of debate
http://consumer.healthday.com/cognitive ... 84034.html
Correcting vitamin D deficiency early in the course of the disease is important ... some experts say it's too soon to recommend giving vitamin D supplements to people with the central nervous system disorder. ...
"Although these data are exciting, these are just studies of association," Waubant said. ... no study has yet established whether taking vitamin D supplements helps reduce new symptoms and disability from occurring in people with MS. "It's possible that the effects we have seen in this and the prior studies are actually due to something else, and not to vitamin D insufficiency," she said.
... trials will help answer the important question of whether it is safe and effective to recommend high-dose vitamin D supplementation to people with MS," Mowry said
while personally, 50 nmol/l is a number i wouldn't bother with (esp since the subjects were also taking ifn-b), i think it's fine to recommend d3 supplements to achieve target serum levels - as long as you clearly understand what is going on with cofactors. which have been studied elsewhere, as detailed above.

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Thu Apr 10, 2014 2:09 pm
by Jaded
Ok I guess I will have to rethink taking D3 then.

Ugh. What if you live indoors and get no sunshine??! Won't you end up with a deficiency??

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Thu Apr 10, 2014 5:12 pm
by jimmylegs
you can take d3 jaded - you're measuring your other stuff and working with minerals too. just proceed with caution :) we'll pm some more; i'm just at a conference so we can get back into it again this weekend.

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Thu Apr 10, 2014 11:35 pm
by Jaded
Thanks JL :)

Enjoy the conference!

FIRST SMALL STEP for pwMS

Posted: Mon Apr 21, 2014 11:50 pm
by MarkW
MarkW wrote: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).

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.
MarkW
I am visiting my in-laws so have not read TiMS. i notice there are challenges to the advice I gave back in 2010. I will comment on the serious posts but my primary action was to review my initial recommendation. My initial recommendation has drifted upwards. i will tell you why I did this or go back to my earlier findings. Please note that I make my recommendation on best advice available rather than wait for this to be proved beyond doubt. I will explain this in later posts.
MarkW

Min Blood Level for pwMS

Posted: Tue Apr 22, 2014 12:04 am
by MarkW
Minimum level for pwMS is 125 nmol/L of 25-hydroxyvitamin D in blood (50ng/ml). This level applies before and after de-stenosis. I increased this minimum from 100 to 125 nmol/L of 25-hydroxyvitamin D in blood (50ng/ml) because there is evidence from a small study (in this thread) which showed that the beneficial effects of D3 leveled off above 100 nmol/L but below 125 nmol/L.
My advice in April 2014:
- Take 5,000 IU a day of D3. It is safe for adults and very cheap.
- Target range is 125 to 150 nmol/L of 25-hydroxyvitamin D in blood (measure in Feb-Mar).
Lifeguards in St. Louis have 150 nmol/L naturally.
My recommendation is based on the probable evidence available rather than waiting for this to be proved beyond doubt as some posters advocate.
MarkW

Should pwMS wait for proof on D3?

Posted: Tue Apr 22, 2014 12:35 am
by MarkW
jimmylegs wrote: Among patients with MS mainly treated with interferon beta-1b, low 25(OH)D levels early in the disease course are a strong risk factor for long-term MS activity and progression. Vitamin D May Slow Multiple Sclerosis, Study Suggests
But whether MS patients should take supplements is subject of debate
http://consumer.healthday.com/cognitive ... 84034.html. Correcting vitamin D deficiency early in the course of the disease is important ... some experts say it's too soon to recommend giving vitamin D supplements to people with the central nervous system disorder. ..."Although these data are exciting, these are just studies of association," Waubant said. ... no study has yet established whether taking vitamin D supplements helps reduce new symptoms and disability from occurring in people with MS. "It's possible that the effects we have seen in this and the prior studies are actually due to something else, and not to vitamin D insufficiency" she said. ... trials will help answer the important question of whether it is safe and effective to recommend high-dose vitamin D supplementation to people with MS," Mowry said.
Jimmylegs said "while personally, 50 nmol/l is a number i wouldn't bother with (esp since the subjects were also taking ifn-b), i think it's fine to recommend d3 supplements to achieve target serum levels as long as you clearly understand what is going on with cofactors".
I agree that "whether MS patients should take supplements is subject of debate". This debate is likely to take 10-20 years before the doubters have a beyond doubt answer about Vitamin D3. Costly large scale studies are needed to prove the current probable answer and these studies cost more than simply giving D3 to all pwMS. Evidence shows that pwMS with a D3 blood level of 125nmol/L progress more slowly than those with a level of 50nmol/L. My recommendation is based on the probability from the growing collection of evidence. You, Jimmyleg, appear to argue that pwMS should wait for proof beyond doubt before getting Vit D3 levels above 125nmol/L. Or have I mis-understood your position?
MarkW

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Tue Apr 22, 2014 5:44 am
by jimmylegs
have I mis-understood your position?
you certainly have - willfully, given the entire debate above.. and most succinctly from this page alone:
i think it's fine to recommend d3 supplements to achieve target serum levels - as long as you clearly understand what is going on with cofactors. which have been studied elsewhere, as detailed above.

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Posted: Tue Apr 22, 2014 6:36 am
by Squeakycat
NZer1 wrote:I've been taking 50,000 iu of D3 every 5 days for over a year, no improvements rather a continued steady decline, so I wonder why this isn't working for me Mark!
Nigel
Nigel, three points: 1) It may in fact be working because it is possible that without the vitamin D, things might have been worse, and 2) It isn't the dose that is important. It is the level. Do you know your 25(OH)D levels? 3) I see your situation as one which justifies the cost of testing of co-factors: calcium, copper, zinc and magnesium.