MS Nutrition-summary pts 1st post, p.1

Tell us what you are using to treat your MS-- and how you are doing.

MS Nutrition-summary pts 1st post, p.1

Postby jimmylegs » Thu Jun 01, 2006 12:54 pm

updated 05-07-2013 dd-mm-yyyy
welcome to my thread on nutrition for health in general, and ms in particular. since my dx in jan 2006 i have done much research on the nutrition connection to health vs disease. many others also do such research and there is a lot of information on diets and supplement regimens.

If you have an MS (or other) 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. i have focused below on nutrients that are extensively researched in health and disease and which have particular relevance to MS (even though the info is often applicable to multiple chronic health problems).

more:

BLOODWORK

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)
vitamin e
vitamin d3
calcium
ferritin
magnesium
selenium
zinc
copper
essential polyunsaturated fatty acids

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, ferritin and copper levels are doing.

SERUM tests for these items (eg serum zinc, serum magnesium, serum 25(OH)vitD3, serum vit b12, serum lipid profile or serum PUFA etc) are a good first step and are most useful for comparison to similar measurements taken in various research studies. for several of the nutrients listed above, I have done some of the work of sifting through the available science on consistently healthy levels, to come up with some levels that look like reasonable targets. more on that below.

you can also look at uric acid and hemoglobin if interested (details below)

it's best to get your own copy of all results so that you can evaluate your level yourself. do not accept 'it's normal' for an answer.

and with that, one of the first things 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
USA:
http://www.lef.org/Vitamins-Supplements ... -Tests.htm
UK:
http://www.medichecks.com/index.cfm?s=2&d=21
http://www.bluehorizonmedicals.co.uk/
http://privatebloodtests.co.uk/
CANADA:
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

SERUM TARGETS

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 (I can't find info to back up this upper cutoff however.. it's just the upper end of the range provided on my lab work). the test is serum 25(OH)D3. absorption may be linked to your zinc status. it's a study that doesn't seem to have been done yet.

at my first d3 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. then I corrected zinc status and my d3 dose response tripled. which means that one time I took the same amount of d3 as I had previously, expecting my levels to jump x amount, but they jumped 3x instead. the only major thing I had changed from the first d3 programme to the second, was correcting zinc deficiency.

fyi
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

RESEARCH
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

general-discussion-f1/topic13204.html#p128490

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 :roll: WHICH would actually be somewhat protective against underlying zinc deficiency :roll: :roll: :roll:

that's it for research for now, more to come.

ORTHOMOLECULAR THERAPY

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...

DIETARY

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).

[update: I didn't make my own vanilla yogurt for long - too much sweetening required. now I stick to occasional yogurt in savoury settings such as tzatziki when I make spanakopita. other days, breakfast typically consists of mixed frozen berries with steel cut organic oats, topped with nuts, seeds, maple syrup and a drop of milk. (i'll prep several days of these at one time). on weekends I usually go for a two-egg spinach-red pep-mushroom-cheddar omelet with a slice of local heritage bacon. occasionally with baked beans, sweet potato hash browns, and fried or baked tomato. I've been known to sneak in the odd egg mcmuffin on a busy morning, so be it ;) ]

SUPPLEMENTS

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/

MY REGIMEN

[[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:

Day 1

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

1xB50-complex

Day 2

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.

ttfn!
Last edited by jimmylegs on Sun Aug 28, 2011 8:31 am, edited 15 times in total.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Advertisement

Postby CureOrBust » Fri Jun 02, 2006 3:11 am

love to read guinea pigs stories. good luck, and cant wait to hear you're results/effects.
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

:)

Postby jimmylegs » Fri Jun 02, 2006 6:00 am

thanks!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Postby CureOrBust » Mon Jun 05, 2006 4:12 am

I have noticed you have done a LOT of reading on D3, but the following is some things to maybe watch out for in the long term (in case others are thinnking there are NO possible side effects). I found this at a sale sit (http://www.anyvitamins.com/vitamin-d-info.htm)

Toxicity and symptoms of high intake
Some clinical guidelines for toxicity are sometimes set as 5,000 to 10,000 iu per day to cause toxicity, but other researchers place the value much higher to reach toxicity. You are however advised to keep your supplement intake to no more than 600 iu per day. Having too much vitamin D in your system could leave a too elevated calcium level, a lower appetite, increased thirst, nausea, vomiting, drowsiness, abdominal pain. A long-term effect of too much vitamin D is the deposit of calcium in soft tissues of the body including the blood vessel walls and kidneys where it can cause serious damage.


I am on about 4000IU a day.
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

thanks

Postby jimmylegs » Mon Jun 05, 2006 6:09 am

yes there are certainly implications for too much vitamin D. i am afraid that the warnings about overuse of this vitamin prevent people from getting anywhere near enough, as opposed to getting too much. i have a page from a book that was given to me by my dietitian, that shows a level of serum cholecalciferol of 320 nmol/l was obtained through taking 50,000 IU per day for four weeks. again i reference the south indian outdoor labourers whose unsupplemented levels were over 450.

anyway here's what wikipedia has to say about the dangers of vitamin D:

Oral overdose of vitamin D3

Overdose is extremely rare; in fact, mild deficiencies are far more common.

While the sunshine-generated quantity is self-limiting, vitamin pills were thought not to be; and this has led to widespread concern, which may well be misplaced.

In practice, the human body has enormous storage capacity for vitamin D, and in any case all common foods and correctly-formulated vitamin pills contain far too little for overdose to ever occur in normal circumstances and normal doses.[citation needed] Indeed, Stoss therapy involves taking a dose over a thousand times the daily RDA once every few months, and even then often fails to normalise vitamin D3 levels in the body.[citation needed]

However, oral overdose has been recorded due to manufacturing and industrial accidents and leads to hypercalcaemia and atherosclerosis and ultimately death.

The exact long-term safe dose is not entirely known, but intakes of up to 2000 IU (10x the RDA) are believed to be safe, and some researchers believe that 10,000 IU does not lead to long term overdose. It seems that there are chemical processes that destroy excess vitamin D, even when taken orally, although these processes have not been identified (in experiments blood levels of vitamin D do not continue to increase over many months at these doses as presumably would be needed for toxicity to occur.)

Note that although normal food and pill vitamin D concentration levels are too low to be toxic, cod-liver oil, if taken in multiples of the normal dose, could reach poisonous levels because of the high vitamin A content in cod-liver oil -- not the vitamin D.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

oh yeah...

Postby jimmylegs » Mon Jun 05, 2006 6:11 am

BTW i think 4000 IU per day is perfect for maintenance once you're at the level you want. that's what i will take once i'm done my 10 days at 50,000IU per day.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Postby CureOrBust » Tue Jun 06, 2006 3:49 am

Have you looked into using a sun bed to try to induce higher vitamin D serum levels?

I am sure i have read of this technique somewhere, a long time ago.

I did a search and found this http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15585781&dopt=Abstract

Which says
Subjects who used a tanning bed had serum 25(OH)D concentrations 90% higher than those of control subjects
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

tanning beds

Postby jimmylegs » Tue Jun 06, 2006 6:59 am

hi, thanks for that :) i had read that uvb rays were required to initiate the cutaneous production of cholecalciferol, and i may also have read the study you quoted in the past. i had a look at the abstract and noted that the beds used in the study were uvb beds.

when i looked into regular tanning salons, i found they were uva beds. this is because uvb are viewed as the more harmful. they penetrate more deeply. anyway, i knew the tanning salon would not do the trick.

i did find a supplier of uvb beds and priced used ones at around $2000 CDN. but i'm putting that off for the time being to see if the $50 concentrated liquid works ;)

so far i remain pretty determined not to cost my government $22,000 dollars per year. i've always been less than impressed with pfizer and made up my own slogan for them: "we put the HARM in pharmaceuticals!" i want to put off doing the rebif thing for as long as i can get away with.

if all else fails i will just have to move back to vancouver and hang out on the nudie beach all day! lol! omg the stairs to get to that thing, i'll never be seen again hee hee hee!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Postby Kasuku » Tue Jun 06, 2006 11:04 am

I have read that a 10 to 15 minutes 3 times a week exposure to the sunlight is sufficient in providing high level of vitamin D. However, there is no mention of amount of skin exposure (head only, head and arms, legs or whole body) and the UV index which is determined by the sun angle when the rays hit earth (summer vs winter, morning/miday/afternoon) and latitude. I also read that the darker is your skin the longer you need to expose it to sunlight. So this 10 to 15 minutes as a rule of thumb seem very imprecise. Do you know of a chart that takes these variables into the equation for the amount of time a person should get exposure to sunlight? In another word what is a minimum time of exposure during the summer and during the winter?

Kasuku
User avatar
Kasuku
Getting to Know You...
 
Posts: 22
Joined: Thu Nov 11, 2004 4:00 pm

age, skin, calculator, etc!

Postby jimmylegs » Tue Jun 06, 2006 12:31 pm

k, you have hit the nail on the head! it's an annoyingly complicated bit of research to undertake!

not only is the colour of your skin a variable, but your age, since an older body is less efficient at hydroxylating vitamin D into calcitriol. i guess this explains florida to an extent!

i've heard the 10 to 15 minutes three times a week figures also. i believe for body parts that's face neck and hands, or you can do hands and arms instead, something like that. i am not keen on the word "sufficient", however. do they mean sufficient to avert rickets (80 nmol/l)? [edit jan 14 2008: not rickets but osteoporosis and osteomalacia - rickets prevention is down around 50 level]. because the research is starting to show that is not going to cut it - for immune system health, it has to be more.

i read a study that in edmonton, alberta, canada they could get enough sunlight between around april and september, and in another, that bostonians get enough between around march and october. i have also read that your serum levels of d fluctuate on a cycle that is offset from your actual exposure. for example a bostonian nudist might run inside for the winter on november 1st, but have their serum vitamin D levels peak at new year's. i'm only throwing out dates as an example only - don't recall the exact dates from that study. ***update - the lag is four months***

what that means to me is, by the time i'd be comfortable exposing expanses of bare skin outside, in may or so, that the sun is going to be strong enough to do the job. nature is amazing, ain't it? and i'm totally comfortable getting my sun in the middle of the day, 10 minutes front, 10 minutes back. where i live, that's not enough to burn. (actually i just did 20 front and 20 back today at 1pm, no problem - barely had time to break a sweat).

on to the calculator. all i've come across so far is one that by the looks of it is only going to estimate how much solar energy is being delivered to the surface for a given location. it does not help you figure out time variations based on age or skin colouring. here's the energy/location calculator: http://nadir.nilu.no/~olaeng/fastrt/VitD-ez.html

so, whether young or old or dark or light, i suggest that one answer is monitoring your serum levels of vitamin D via the lab, perhaps getting 4 tests for the first year, to see how the levels fluctuate seasonally, and then settling into maybe an annual early spring check thereafter, to get a sense of the 'worst case scenario' each year. also you might find that you don't like where you're at on the scale after the first test, and would consider taking extra supplements to get into a healthy range, and then monitoring the annual cycle thereafter.

the reason it is important to have serum cholecalciferol (prehormone "vitamin" d) levels appropriately high is so that your liver and kidney can hydroxylate it into calcitriol which is a HORMONE required for REGULATION of the immune system.

i am not a doctor, this is just info i have synthesized from a whackload of reading up on vitamin D research. if anyone wants to read more, i have posted many journal references in other strings, just search for me as author and look for vitamin D titles in the results...
Last edited by jimmylegs on Wed Mar 11, 2009 8:34 pm, edited 3 times in total.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Postby Kasuku » Tue Jun 06, 2006 1:56 pm

Thank you Jimmylegs for your informative response. I have another question if you don't mind. Do you know how vitamin D helps the immune system? I assume that the action is more by immuno-modulation than immuno-suppression. Is it via Th2 vs Th1 response? or anti-inflammatory vs pro-inflammatory cytokines? or up-regulation vs down-regulation of immune cells?
Is vitamin D also recommended for other auto-immune diseases, like lupus, RA, etc.? Sorry this is more than one question.
K
User avatar
Kasuku
Getting to Know You...
 
Posts: 22
Joined: Thu Nov 11, 2004 4:00 pm

more on d

Postby jimmylegs » Tue Jun 06, 2006 2:48 pm

vitamin d status is correlated with incidence of rheumatoid arthritis, alzheimers, various cancers, diabetes, multiple sclerosis, and more i can't think of right this second.

once cholecalciferol has been hydroxylated once (by the liver) it is called calcidiol (25 hydroxyvitamin D3) and after a second hydroxylation in the kidney it is called calcitriol (1,25 dihydroxyvitamin D3).

calcitriol is produced by the immune system when it needs to put the brakes on a response. so yes it is immunomodulatory. it does not "suppress" immune responses, it tells them when enough is enough.

i have to run out to a meeting but i will find some of my other posts on this when i get back tonight. or you can scout around the forums here to see if you can find a previous post of mine about it.

ttfn!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Postby Kasuku » Tue Jun 06, 2006 3:13 pm

Please do not spend time searching the posts, I can do that. You have been kind enough to answer most of my questions and to direct me towards more answers. I will look into previous posts for further information. Thanks a lot
K
User avatar
Kasuku
Getting to Know You...
 
Posts: 22
Joined: Thu Nov 11, 2004 4:00 pm

Diseases with an insulin component

Postby lyndacarol » Tue Jun 06, 2006 6:58 pm

Jimmylegs, in several things I've read, excess insulin is listed as being involved in the same diseases that you listed, as well as heart disease, hypertension (high blood pressure), high cholesterol, and obesity.

I still think the two (insulin and vitamin D) must be connected!

By the way, when asked for a serum D test, my internist said he did not feel comfortable with that and MS-specific topics. He recommended that I contact a neurologist or MS specialist. I was rather surprised by this. So my next step is to request it of my neuro, with whom I have an "as needed" understanding.

In the meantime, I am sitting in the sunshine more than ever in recent years! No changes yet, but it is pleasant. Thanks.
User avatar
lyndacarol
Family Elder
 
Posts: 2089
Joined: Thu Dec 22, 2005 4:00 pm

k and LC

Postby jimmylegs » Wed Jun 07, 2006 10:49 am

kasuku, you're welcome, and if you don't find what you're looking for please let me know

LC, i hope you are successful soon with getting the serum test.

it will be interesting to discover the nature of the link between insulin and vitamin d... i suspect calcium is involved. i have read about insulin being low when vitamin d is high, but i've also recently read (in a diabetes context) that improving vitamin d status INCREASES insulin output. i will keep reading. at this very early point i'm beginning to think that D and calcium between them can help normalize high or low insulin production.

[2012 comment: wowww i clearly knew nothing about the roles of magnesium or zinc back then]
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9237
Joined: Sat Mar 11, 2006 4:00 pm

Next

Return to Regimens

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users