welcome to my thread on MS nutrition. since my dx in jan 2006 i have done much research on the nutrition connection to MS. many others also do such research and there is a lot of information on diets and supplement regimens.
If you have an MS diagnosis, you are likely to have a constellation of nutrient imbalances (see BLOODWORK below) that have been extensively researched (see RESEARCH below). unfortunately, the knowledge gained via this research is only sporadically applied to mainstream treatment.
Status of nutrition education in medical schools
http://www.ncbi.nlm.nih.gov/pmc/article ... rt=classic
"On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h)."
ime, elements of success re optimizing nutritional status include:
1) willingness to be proactive about one's own health (what a light bulb moment for me - the doctor is not the responsible party!)
2) willingness to learn about nutrition research and take the info on board going forward.
3) access to a cooperative health care professional, who is willing to use nutrition research and facilitate bloodwork.
4) a clear understanding of the distinct difference between 'normal' lab values and 'optimal' ones. your doctor probably won't get this
5) willingness to undertake a long term nutritional restoration project aimed at achieving healthy serum targets, using adaptive management and monitoring data to adjust one's regimen if and as needed, over time. this is very important. supplements at high doses can create imbalances of their own over time. you can't just start a regimen, especially a high dose regimen, and keep it up for years without testing its effects on other nutrients.
6) understanding that dietary supplements should not be used in place of biologically appropriate whole foods
7) recognition that while results may exceed expectations, a nutrition programme is not going to grow back any missing limbs, teeth, etc..
nb: these elements are far from written in stone, just my reflections on what constitutes the best case scenario for managing relatively complex long term issues. by way of comparison, i have managed to help generally healthy ppl with relatively minor complaints achieve health objectives with dietary change only, no blood work or supplements. in some cases a short term course of specific supplements has done the trick without bloodwork, and then people return to their normal routine.
going forward, some areas to consider include bloodwork, nutrient targets, dietary strategies, and *nutrient* supplements. more:
few approaches that i've looked at to date incorporate and/or elucidate target optimal levels of various nutrients. establishing the nutritional profile of an MS patient compared to the nutritional profile of a 'healthy control', and then working to push MS levels into the 'healthy' range, has been my focus. note that ms patients and healthy controls can typically all be described as 'normal'. the difference between patients and 'healthies' is RELATIVE deficiency, generally found within the normal range, eg low normal vs high normal.
Suspect nutrients for MS patients include but are not limited to:
vitamin b complex (all of them, particularly b12)
essential polyunsaturated fatty acids
if you can't get all of these done at once, personally i would prioritize testing for zinc magnesium d3 and b12 first, the rest later. to help prioritize 'later' items, it's useful to look at interactions, eg getting a handle on how your zinc, iron and copper levels are doing.
SERUM tests for these items (serum lipid profile or serum PUFA for the last one) are a good first step and are most useful for comparison to similar measurements taken in various research studies.
you can also look at uric acid and hemoglobin if interested (details below)
The first thing to understand when beginning nutrition investigations, is the unfortunate language of the lab. Specifically, the term 'normal'.
As described briefly above, the 'normal' range is often quite a broad range which in many cases includes both sick and healthy people.
There is a much smaller range within the normal range that can be described as 'optimal'.
For example, at one lab i'm aware of, the normal range for serum zinc is given as 10-20 umol/L. at an infectious disease clinic, the normal range for tests done there was 9-14 umol/L. at my MS clinic the range is 11.5-18.5 umol/L. and at my neighbourhood lab, the range is 8.6-19.1 umol/L!!
ms patients average in the low teens. healthy controls average in the high teens, with high end healthy levels sometimes over 20. one example of toxicity in research involved levels over 36.
One example of the danger of the word 'normal' is this: recently a patient here at TIMS asked for a zinc test and was told the level was fine. When the patient asked for the number it came back 10.083 umol/L (normal range 10-20 in this case). This patient was not told that the level was suboptimal, borderline deficient, or outright deficient (which it was if you use 11.5 as the cutoff..) just that it was 'fine' - ie the computer did not red flag it because the value was within that lab's min and max setpoints. these ranges appear to be set by the actual tests done at individual labs, which means the data is not likely to include representative values for healthy individuals. why would someone healthy ask to go for a zinc test? why would the doc order it?
Another example: the normal range for uric acid is 140-360 umol/L. MS patients average 194 umol/L. Healthy controls sit in the 290-300 umol/L range. Interestingly, uric acid levels are positively correlated with zinc levels. So if you are low in zinc you are likely to be low in uric acid too. read more: http://www.sciencedirect.com/science/ar ... 1787800416
fyi some people boost uric acid levels using inosine. that is a band-aid solution imho, and doesn't address the broken urea cycle (or associated high ammonia levels), which depends on proper liver function. addressing the low zinc level seen in ms patients provides the liver with the tools it needs to deal with ammonia properly, and uric acid levels rise as a result. the info is in the research and i have bloodwork of my own that corroborates the scientific findings.
If your lab does not use the same units as shown below, feel free to ask me about conversion.
Here is a useful conversion resource:
(well it got scrapped but I found essentially the same thing at a diff URL.. http://hijazi.us/ClinicalData.htm)
NEW april 8 2013 and one more good one (includes selenium unlike the first above)
http://onlinelibrary.wiley.com/doi/10.1 ... 5.app3/pdf
some private testing options
http://www.lef.org/Vitamins-Supplements ... -Tests.htm
patience, Canadians.. looks like this is all we get so far: http://www.bloodtestscanada.com
in the meantime, check out what's covered in your province/territory, eg here is the OHIP schedule of lab services
http://www.health.gov.on.ca/english/pro ... 990401.pdf
beyond that it's just a matter of a) convincing the doc, or b) finding a naturopath (watch out for the push re b12 injections.. I've seen shots recommended to ppl with excellent b12 lab results)
some alternative zinc testing info/options
http://www.diabetesexplained.com/zinc-d ... #serumzinc
vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
vitamin D3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). no higher than 250 nmol/L to avoid risk of hypercalcemia. risk appears to increase the better your absorption of d3. the test is serum 25(OH)D3. linked to your zinc status.
at my first test i had already been supplementing thousands of IU per day for months and my level was only 72 nmol/L, but that was when my zinc was deficient and i didn't know it yet.
Severe Hypercalcemia Following Vitamin D Supplementation in a Patient With Multiple Sclerosis
http://archneur.jamanetwork.com/article ... id=1107961
she was only on 5500 IU of vit d3 per day. regular monitoring is the key with supplementation of this kind!
(oh and by the way this article lists the reference range for calcium as 8.7-10.1 mg/dL)
zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL) i have not firmly established this upper limit but i would say go no higher than 20 umol/L (~130 ug/dL). the test is just serum zinc.
at my first zinc test my level was 8.6 umol/L. [update: found a study of children with healthy controls averaging 20.5 umol/L serum zinc].
copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). NB zinc supplementation should always be balanced with copper. detailed copper info here general-discussion-f1/topic19529.html#p188525
magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL). this is conservative. studies have proposed higher optimal levels eg 1.6 mmol/L or 4.0 mg/dL.
'normal' range in SI units is only 0.70-1.10 mmol/L. I've seen normal range given as 0.65-1.05 mmol/L locally, so even worse. the test is just 'serum magnesium'.
when i first tested magnesium, my level was .88 i think? i can feel the difference in my body when my magnesium is sub-optimal.
dec 2011 update: just found a new source for optimal serum magnesium status, higher than previously cited... but no references available... YET
"2.4 - 2.8 mg/dL (1.0 - 1.2 mmol/L)"
may 2013 update: SOLID! just found a reference for healthy controls mag status average 2.7 mg/dL. well to be exact, 27 mg/L. hats off to Nellie for asking the right question
nov 2013 feedback on a member's mag test result: undiagnosed-f54/topic23800.html#p218449
selenium: two reference ranges found..
0.90 to 2.00 µmol/L (adults) http://www.trace-elements.org.uk/trace- ... /selenium/
< 0.3 µmol/L (in adult) - supplementation may be required
> 2.5 µmol/L (in adult) - possible toxicity
1.02 to 1.91 µmol/L, OR 80 to 150 µg/L (molecular weight of Se is 78.96)
whole blood Se in MS patient 52.8 ± 11.3 ng/ml
whole blood Se in controls (not likely truly healthy controls given how far below 90 they are...) 68.8 ± 11.0 ng/ml
calcium: just a link to p. 11 for now, more later: regimens-f22/topic2489-150.html#p57111
uric acid: aim for 290-300 umol/L (about 5 mg/dL). you want to be no higher than 360 umol/L or you risk gout. MS patients average 194 umol/L, lower in relapse, higher in remission. uric acid is a powerful antioxidant. uric acid levels flucutate in step with zinc status. test: serum uric acid.
at my first test i was bang on 194. for years my range was 188 to 194. most recent test 278! (after addressing zinc deficiency).
hemoglobin: at least 13 (per klenner protocol for ms, i'll get back to you with the units i forget right now)
Hemoglobin (whole blood) Mass concentration
g/dL=10.0g/L; g/dL=0.6206 mmol/L]
think the result was 11 at my first test? i was vegan for a long time, insufficient dietary protein etc.. can't remember my last Hg test result, but i'm vegan no longer.
ferritin: the hemoglobin measure is related to your iron status, which you can assess in part using a serum ferritin test. if you want to go further there are additional tests, but serum ferritin is a decent broad-brush-stroke sort of test.
my lab's guide to ferritin levels (in ug/L)
<18 probably iron deficient
18-40 possibly deficient
41-100 probably not deficient
101-300 not iron deficient
>300 possible iron overload
fyi certain sources consider levels over 200 potentially trouble, and i've seen one study where higher levels of ferritin were associated with greater risk for diabetes (the very highest was 335!). i'm tending towards aiming for 100... levels as low as 80 might be okay, but i need more studies to really get it nailed down.
previous ferritin disscussion: general-discussion-f1/topic16435-45.html
iron dysregulation and deposition is seen in zinc deficiency. i'd be interested to find out the zinc status of ccsvi patients with iron deposition.
i used to be low in iron, at last test i was higher than i've ever been. it's clear at this stage that i'm getting enough iron from my diet and do not need additional supplementation (beyond whatever's in my multi). i have more relevant nutrition info but that's a good start. will be back with additional updates re B vitamins, selenium, etc.
just adding a link to a post elsewhere on copper. any therapeutic zinc supplementation should be properly balanced with copper, here's some more detailed info on target levels, in case you happen to get serum copper tested: general-discussion-f1/topic19529.html#p188525
for the moment, just linking up to a post i did for mirry a few years ago, you can print and take to the doc to help justify testing various nutrients
the list presumes docs are in the know re b12 and d3. then adds abstracts for zinc, uric acid, magnesium, selenium, the vit e study below, and fatty acids.
also here's the link to copper studies again: general-discussion-f1/topic19529.html#p188525
this study amuses me:
Alpha-tocopherol and NADPH in the erythrocytes and plasma of multiple sclerosis patients. Effect of interferon-beta-1b treatment.
OBJECTIVES: To investigate the influence of interferon-beta-1b (INF-beta-1b) therapy on blood antioxidants (alpha-tocopherol and NADPH) in multiple sclerosis (MS).
METHODS: Patients with relapsing-remitting MS (n = 14) have been studied during 6 months of INF-beta-1b therapy. alpha-Tocopherol was determined by HPLC and UV or electrochemical detection; NADPH was quantified spectrophotometrically. RESULTS: The erythrocyte alpha-tocopherol level was reduced (p < 0.001) before treatment, but had regained the control level by 6 months of therapy.
thank goodness we have interferon to correct our low vit e levels WHICH would actually be somewhat protective against underlying zinc deficiency
that's it for research for now, more to come.
when i started this thread i did not yet realize that my approach had a history and a name. can't recall when i figured out this name for it, but just thought it would be good to include that info right here at the start, so here's an intro link:
Orthomolecular Medicine for Everyone
may 7 2012 update: i still haven't read that file i linked to above. i just had a quick scroll through and think i'll have to take the time to read it thoroughly. not keen on the intro being so conspiracy theory/defensive. i guess facts are facts when it comes to the history of this approach, but i wouldn't necessarily lead with them. i am curious to see which target levels these authors may have nailed down at this later (2008) stage. i have one older ortho med book and the whole way through the author talks about treating various things with therapeutic doses of supplements, but there is no mention of levels whatsoever. i don't like that aspect of the 1971 klenner protocol either, the only target you got was hemoglobin. if i do find some more levels it'll be interesting to see how they compare to the ones i've gleaned over time.
june 1 2012 update: okay well i just had a glance over it in a little more detail but it's just a preview so can't read (of course) the ms section. looked at the references for that section, looks half decent but there's no way it's exhaustive for ms. flipped through some other sections that i could read in full, and unfortunately, no target levels, just suggested supplement intakes. that kind of approach is just not scientific enough for me. imho the levels have to be monitored so you know that your regimen is effective. on to next steps...
over the years i've run across a number of approaches, eg exclusion diets that were suggested to me by my naturopath, along with all the permutations and combinations you see in the diet section here at TIMS. i rejected the idea of excluding things like meat, dairy and eggs, since as a vegan i hadn't had any of those for 15 years prior to diagnosis. i also rejected the idea of excluding foods like legumes or gluten grains that have a tendency to being pro-inflammatory and 'might' cause an inappropriate inflammatory response. i preferred to figure out why the body would be reacting badly to simple food, and fix the underlying problem (spoiler alert: zinc deficiency plays a big role in ms and inflammation in general - avoiding gluten etc allows a person's zinc levels to recover somewhat... venison beef and lamb are great dietary sources of zinc). my naturopath introduced me to the idea of intestinal permeability and that made a lot of sense. i thought if i fix the intestines, then i don't have to avoid certain foods. her proposed solution was castor oil packs. i never bought into that but did a lot of reading and eventually came to rest on zinc as a figurative glue that helps hold the intestines together (just one of its many, many jobs), and a nutrient that can be seriously depleted by common developed country dietary choices. getting ahead of myself. so..
i also came across the 'klenner' protocol for ms, which had a strong focus on the b-complex, and i already had established my b12 deficiency from vegan diet. klenner recommended a high protein diet with 2 eggs for breakfast. that made a lot of sense to me as i thought very likely that i could be deficient in protein energy.
even though the supplements part of the protocol was too intense for me to undertake 100%, the version i adapted for my own use resulted in the largest improvement in my condition of any time since dx. 3 days showed massive gains, so i kept it up for quite a while. it's megadose therapy though, so i backed off after a time.
i've also (partially) taken on board the notion of nutrient density, and make a lot of use of george mateljan's 'world's healthiest foods' web site. http://www.whfoods.com
it can be very informative to use WHfoods to review your daily intakes (in mgs) of the suspect nutrients for MS as above (ie, vitamin b complex esp b1 and b12, vitamin e, vitamin d3, magnesium, selenium, zinc, essential polyunsaturated fatty acids). ignore % daily value. they are typically low even for healthy ppl, but more especially so for ppl who are already sick.
further, i enjoy the nutrient search tool at http://www.nutritiondata.com. the amount of detail you can access is amazing. this web site led me to the concept of inflammation ratings, developed by monica reinagel.
weil's anti-inflammatory food pyramid is a useful complementary resource, but i don't visit this site often: http://www.drweil.com/drw/u/PAG00361/an ... ramid.html.
whfoods and nutritiondata are the two top sites i frequent for food info. (as distinct from science info, for which pubmed and resources like scholar.google.ca are tops)
thought i'd provide a better description of my diet.. i try to eat wild salmon once a week, and white fish in between, ensuring minimal heavy metal or fishery sustainability concerns. red meat once a week, including pork and goat from a local not-quite-organic farm. i eat free range eggs from the same farm too. have a cow fattening up on grass over the summer (2012) there too, or at least a quarter share in one of the beef cows. i eat dairy in a limited way, eg milk in tea, cream in coffee, a very small amount of extra old cheddar cheese per day. i eat nuts making sure that the O3:O6 ratios and pro- and anti-inflammatory factors are balanced, and i eat lots of salads and dark leafy greens like spinach, chard, and kale. last night for dinner i had roast chicken, kale, asparagus, potato, and gravy, yesterday for lunch i ate a hard-boiled egg and a square of vegetarian spinach-cottage cheese lasagne, prepared with whole wheat noodles. (if i wanted to half the pasta i would use layers of thin sliced zucchini - very tasty) for breakfast, i had frozen mixed berries with home-made vanilla yogurt (ie store bought plain yogurt with added vanilla and maple syrup), topped with dried cherries, dessicated unsweetened coconut, and chopped walnuts (normally would have had flax seeds too, just not yesterday).
as to supplementary forms, ones that are non-synthetic and sourced from whole foods are the best, if you can find/afford them.
here are just a few which i think people are most likely to have trouble with picking up a less than ideal form, or just not being able to find a decent one:
vitamin b12 - choose a bioavailable form such as methylcobalamin. not cyanocobalamin. sublingual absorption should be just as effective as injection. i used to take 1-2000mcg per day. now i just get my b12 in a b-complex multi. it's a good multi to have methylb12 not the cyano form.
vitamin D - choose vitamin d3, not d2. personally i use very high potency drops, 1,000,000 IU/gm. when i take it, i eke out about 5000IU in a small drop.
vitamin E - choose a natural source natural ratio E8 complex, with 4 tocopherols and 4 tocotrienols. note: you don't want just alpha tocopherol, or 'mixed tocopherols'. i take 400IU per day
magnesium - choose a soluble organic form. magnesium glycinate is one of the best i've found to date. i like citrate too, but i can take more glycinate without getting GI side effects. i take 1 mag glycinate and at least 1 mag citrate per day.
selenium - choose selenomethionine. 200mcg is the recommended daily intake from all sources. right now i am taking 200 mcg as a supplement, every other day.
zinc - they say zinc picolinate is the best for absorption, but i have had success with zinc citrate. i take 50 mg elemental zinc from zinc citrate. it is balanced with 2mg copper (as copper citrate, not cupric oxide) to prevent copper depletion. recently learned that zinc supplements are often contaminated with cadmium due to their close similarity. apparently zinc gluconate is supposed to be least likely to contain cadmium:
http://www.nlm.nih.gov/medlineplus/drug ... l/982.html
"Note that many zinc products also contain another metal called cadmium. This is because zinc and cadmium are chemically similar and often occur together in nature. Exposure to high levels of cadmium over a long time can lead to kidney failure. The concentration of cadmium in zinc-containing supplements can vary as much as 37-fold. Look for zinc-gluconate products. Zinc gluconate consistently contains the lowest cadmium levels."
if i find 50mg zinc gluconate balanced with at least 2mg copper citrate or similar (NOT cupric oxide though), that will be my next bottle
example of a b-complex with methylcobalamin: http://www.aor.ca/products-page/5-methy ... b-complex/
here's an example of a good vit E8 complex product (after natural food sources of course): http://www.newrootsherbal.com/product/view/id/1093
excellent example of a multi with methylcobalamin for b12, AND E8 complex for the vit E: http://www.aor.ca/products-page/ortho-core/
(unfortunately aor's basic multi is not up to the standard of this advanced ortho core product)
this is the sort of place I buy supplements: http://www.nutritionhouse.com/
an international distribution option (based in the US) that I've used when i can't find what i want locally (pay attention to import tax info): http://www.iherb.com/
if you're in the UK this looks like a decent option: https://www.revital.co.uk/
[[regimen update july 2013
i'm on a trimmed-down regimen lately. not ideal, but doing okay. will be getting some bloodwork done soon to see the results of the following:
2 multivit/multimin powder capsules
2x1000mg vitamin C powder capsules
1x50mg zinc citrate (plus 2mg copper citrate)
2x omega-3 from fish oil (contains some added vit E and D3)
taking a break from 1x100mg magnesium glycinate (need to restock on citrate - i think the glycinate form is too much for me right now)
right now the dosette is set up so that i alternate selenium and vit a. ie
1x200mcg selenium (selenomethionine) on M W and F
1x10,000IU vitamin A on Sun T Th and Sat
still sporadic with the d3, 5000-10,000IU at a time. and trying to get out in the sun, weather permitting
back to the older fuller regimen:]] this one's for you, koopico!
just refilled my dosette for the week. here's how it goes:
2 'active women's' multivit/multimin powder capsules
2x1000mg vitamin C powder capsules
1x400IU vitamin E8 complex
1x100mg magnesium glycinate
2x200mg magnesium citrate
1x50mg zinc citrate (plus 2mg copper citrate)
2x893mg omega-3 from fish oil
the same, except instead of b-complex i take
1x200mcg selenium (selenomethionine)
1x10,000IU vitamin A
i am still taking my high-test vitamin d3 pretty sporadically, 5000-10,000IU at a time, supposed to be a couple times a week but i haven't been diligent lately. i am out in the sun almost every day at this time of year, and with my zinc status sorted out my efficiency at hydroxylating it to active forms should be pretty decent.
BACK TO THE BEGINNING...
* * *
In my continuing spirit of self-guinea-pigdom, I am trying a short burst of big time vitamin D3. This is in order to boost my serum levels up to around 125-150 nmol/l (the level recommended by one of my doctors, who also has MS).
I figured out from the literature, that it was going to take 5 months to get where I am supposed to be, if I stayed on my recent average 4400IU daily.
So, I found out from the drug info centre, how much to take to get a quick jump up about 50 nmol/l. They said they do 50,000IU per day for 10 days, but would usually use that on people that were seriously deficient.
My last level was 72 nmol/l which is only a little bit under the good zone for bone health. Some would argue it is way low for immune system health. So, I am not worried by jumping up another 50 nmol by next week.
I went to my family doc and asked for a prescription for 50000iu for 10 days and 4000 iu per day daily maintenance thereafter.
She said okay but also gave me a lab requisition for baseline testing prior to starting the big dose, another lab req for right after the big doses are over, and a third req for 2 weeks after to see if we're on the right track re: maintenance at 4000 IU/d.
My lab's computer system says that serum D3 levels over 250 are toxic but I relayed the story about the south indian workers with unsupplemented natural levels over 450 [edit: i'm okay with 250 being a safe upper end of the range, and anyway i was not and am not going for over 250!]. I also mentioned that I had a reference from my dietitian that listed a study where 50000IU taken daily for a month resulted in serum levels of 320, so 10 days should be safe in my case, and won't even get near her 250 limit anyway.
So the pharmacy i went to has a compounding license and he had ordered me the smoking highly concentrated D3 after a discussion we had last week. It's 1,000,000IU/gm. So I take 1/20th of a gm per day for 10 days. Instead of having to take 50 d3 pills each day for 10 days, I get to have about 2 drops of this liquid from a graduated oral syringe. SA-WEEEET! so much better than pills!
so, i get the baseline D result back probably on Monday, and will keep u all posted as to the improvement in my levels, and hopefully general condition and symptoms.