This Is MS Multiple Sclerosis Community: Knowledge & Support

I'll post back here in Tues 22 Dec, when I get results of my most recent D test.
Getting D to "proper" level is a bit of a puzzle. For about 10 years I had been taking 800 IU's, so just assumed was getting enough. Osteo clinic, despited my osteoporosis, never advised a blood test. Then, somehow got onto all the new info on D (a very good site is www.vitamindcouncil.com ) and got tested about 2 1/2 years ago--was defecient! Has taken me the 2 1/2 years to bring it up to 58 (level 2 months ago) Test results Tues will let me know if I am now absorbing the D better, to see how much to continue taking daily.
I took from 10-14,000 per day for 6 months to get first good level, then took from 4-10,000 per day.

And yes, the calcium deposition can be a problem, so my doctor took blood for Ca level also, which I will report. This might be a serious concern--a few months ago got x-rays of neck for chiropractor, and showed calcium deposition in carotid artery (seems not to be obstructing in major way yet ). So, since my D levels are somewhat okay, will have to decide whether to risk more Ca depostion with high D doses--if my D is above the 58, which it should be, I think I will reduce the level I take. Will need to see D and Ca levels before deciding.
I think we are in unchartered territory here--This new research on D is quite recent, and taking such massive doses has not been done before. Probably best to err on side of caution at a certain point--even the 120 level for MS has not been tested. This is ALL new as far as D goes.

As time goes by, I believe less and less in a positive effect of vitamin D on MS. In my own experience, I took 8000 IU per day for over a year and noticed no change in my condition. I accept the fact of the geographic distribution, in which the prevalence of MS decreases with the proximity to the equator. But I do not attribute this to increased levels of either vitamin D or UV rays.

I think there must be another variable responsible -- possibly this one mentioned in the book, The MS Solution by Kathryn R. Simpson, M.S.:

"Melatonin production is reduced in response to light hitting the eye -- with higher levels made in the dark. Some think that melatonin, not vitamin D, may be the answer to why people at higher latitudes are more prone to MS. Less sun results in too much melatonin, which in turn causes the thymus gland (which manages T cell immune activity) to allow autoimmune activity to develop. Animal studies show that constant darkness aggravates the symptoms of MS. Thus, higher levels of melatonin may be a catalyst to triggering MS, but low levels seem to cause worse disease progression. Studies show that when melatonin levels drop, it often triggers an exacerbation of MS symptoms."


I suspect even another variable yet could be responsible.

What units were on that test result of 58? If it's ng/mL, then that converts to 145 nmol/L and puts you right in the sweet spot of about 150 nmol/L.

It's always best to check up on the units the lab company is using. For example, I just got my zinc tested and the report from the lab company didn't even mention units so I had to get that info from their web site.

NHE

hey there LC, i don't think we will find one single factor nutritionally that makes it all fall into place for everyone.. it's too complicated.

also, i don't think D3 reverses MS - i think good D3 status is known to be protective. i don't have time to go back looking for it, but there was a study of military personnel in the US and the ones in the top quintile for D3 (over 100nmol/l) had the lowest MS risk.

that's not to say pineal/thymus issues don't play a role.. maybe i am doing so well in part because i work outside and get basically maximum natural light exposure for my latitude??

great point on the units, NHE.. i wouldn't think that in NYC they are giving results in nmol/L..

also shye you may already know this but you can decrease the risk of calcium issues in high d3 intake, by taking calcium. it's also best to take some magnesium, both with the d3 and away from it, and some zinc. to achieve the needed doses in food, would involve a heck of a lot of dark leafy greens each day, a la Dr. Wahls. Plus a bit of red meat or some oysters Or you can do your best with diet and add a supplement pill.

gotta split for work! first day on the slopes today!!!

Jimmylegs
Am taking Ca, Mg, Zinc supplements, have been for ages. So not as protective as we think.
I'll be starting chelation at start of new year, and will post the info from that under chelation thread in CCSVI forum. (or maybe should start the thread here).

Thanks for the conversion info NHE --can't locate my bloods this second, but will see what they use when get results on 22nd.

sounds like it depends on getting the balance just right!

This is follow up on D level--
there was a snafu, so results delayed. Got them today:
My D level is now 44 ng/mL (a few months ago was 58, and those few months continued to take 5-7,000 IU per day !!) So, either D is not being absorbed correctly, or I am using it up fast. Whatever, definitely not a problem of having taken too much.
the reference level is 20-100 ng/mL, so not even at the halfway point.
(converted to nmol/L would be about 110 )
This is from the infamous Quest Diagnostics, which insists they have corrected their problem in results (they insisted this prior to my 58 results)--

And, for all those insured by medicare--they no longer pay for testing of Vitamin D !!!!! (my guess is the info on D is spreading faster than medicare wishes, and they got too many requests to have it tested)--Maybe we should contact our congressmen????

hey there, 44 ng/mL is pretty good! and from what i understand 4000IU is supposed to be a maintenance dose. it's possible that you are not absorbing it efficiently for some reason.

from what i've seen, halfway points don't mean much as far as reference ranges go.. 110 is pretty decent ... even so i personally aim for 150.. got a result back today and i'm at 123. that's taking a 25,000iu once a week.

hmm wonder what might be coming down the pipes for benefits here :S

Hi there..
Just wanted to ask about this.....I already take 1000mcg of B12 daily because I am slightly low in B12 but a homeopathic Dr. recently told me to start taking 5000mcg of B12 and Rhus Tox for my spasms/tremors & stiffness. I asked him if he had ever treated anyone with MS and he said no. I haven't increased my B12 or taken the Rhus Tox yet as it has no reference that I can find anywhere of anyone with MS ever using Rhus Tox & the B12 seemed like an awfully high dose to me.

Has anyone else ever taken Rhus Tox for MS symptoms or such high doses of B12 before?

hi suenz, taking 5000mcg per day of b12 has the potential to mess with your sleep-wake patterns. that's about the only adverse reaction that i'm aware of to date. also, 2000mcg is plenty, and even at that you probably need to be careful with timing the intake. what form of b12 are you currently taking?

as for the rhus tox.. poison ivy.. interesting. what are you currently taking for vitamins and minerals? how is your diet? do you think you are getting the right balance of iron, copper, mag, calcium, sodium, potassium etc? i think it would be a good foundational step to address the known nutritional imbalances in ms before adding herbal remedies... there are plenty out there in use for ms, and i have not heard about poison ivy being one of them so far!

i visited a naturopath a couple of times in 2006, one who HAS ms - and i didn't even take everything she said withouth a large grain of salt.

personally, i think you are right to be skeptical and if i were you i would make sure to choose health advisors who have plenty of experience working with ms patients.

hope that helps!
JL

Thanks JL

I am already taking 1000mcg B12 sublingual Methyl and 2500 UI Vit D3, 500mg calcium and just started taking 1 capsule daily of Fish oil - Salmon plus I tried to start using the MS Diet this past Fall.

I am supposed to go back to the naturopath this month but am thinking of cancelling my appointment - someone else suggested to me another one but its hard to find someone who deals with MS patients.

I was also deciding whether to start taking the LDN treatment but not sure about side affects like vivid dreaming if I already have interrupted sleep. Is this pretty safe to take?

hey there, sublingual methyl b12, D3, calcium and fish oil sound GREAT.

it will probably serve you well to add some magnesium into your regimen. if you can split it up and take 250mg magnesium citrate with your vitamin d3 and calcium, but take another 250mg magnesium citrate at bedtime, you will probably benefit sleepwise and stiffness wise also. the 'best bet diet' supplement recommendations, if i remember right, say 1000mg calcium, 500mg magnesium, and 25-50mg zinc.

consider the antioxidant 'ACES' group - that's vits A, C, E, and selenium. you could either boost food sources, or consider a vit A supplement, some beta carotene, vit C (in addition to fresh fruits and veggies i like to take a couple grams of C powder, in capsules), if you take any vit E make sure it's natural source E8 complex (or get sunflower seeds/oil in you regularly). selenium requirements can be met with 2 or 3 brazil nuts per day, or you can get 200mcg capsules of powder, which help out too. this is a pretty important blend esp for flu season - selenium (zinc too) are good at helping your body fight off viral and bacterial infections.

does your local MS society chapter have any good naturopath recommendations? i did not find mine through that channel (i called them once and it was so bad, i never called again) - i learned after the fact, that that naturopath was in fact in touch with the local MS society office.

just had a quick look into LDN. it is low dose, so theoretically safer than regular dose naltrexone.. but regular is 10mg and up, while "low" is 1mg to 10mg daily.

usually when i am looking at pharmaceutical products, it's to try to figure out what body system is supposed to be doing that job, and how to support it if possible.

in the case of LDN, i read this basic description:
"LDN exerts its beneficial effects by reducing inflammation and oxidative stress, modulating the immune system, and inhibiting cancer cell proliferation".

just to take a single element from that, we know that the beta-tocopherol in natural vitamin E8 complex inhibits cancer cell growth. it is protective against cancer in different ways than just being an antioxidant like alpha tocopherol (your typical vit E supplement). in fact regular vit E supplements actually drive down beta tocopherol - that's shown in the data from one study... i will have to review my older posts to find that one again...

other than that, i look at how drugs deplete nutrients in the body, and which side effects might be deficiency symptoms, etc. i have a list of nutrients depleted by anti-inflammatory drugs but it's very non-specific so i have no idea if LDN is responsible for any of the following:
Combat Drug-Induced Nutrient Depletion
What Does Your Drug Deplete?
Anti-Inflammatory Drugs (includes Corticosteroids, NSAIDS)...
Calcium, Vitamin D, Potassium, Zinc, Magnesium, Vitamin C,Folic Acid, Vitamin B12, Selenium, Chromium, Vitamin A

interesting!

anyway hope that helps,
JL

neat abstract

link: Effects of Microwave Heating on the Loss of Vitamin B12 in Foods
To clarify the effects of microwave heating on the loss of vitamin B12 in foods, raw beef, pork, and milk were treated by microwave heating and then their vitamin B12 contents were determined according to a chemiluminescent vitamin B12 assay with hog intrinsic factor. Appreciable loss (30−40%) of vitamin B12 occurred in the foods during microwave heating due to the degradation of vitamin B12 molecule by microwave heating. When hydroxo vitamin B12, which predominates in foods, was treated by microwave heating and then analyzed by silica gel 60 thin layer chromatography, two vitamin B12 degradation products were found. One of the compounds with a Rf of 0.16 was purified and partially characterized. The vitamin B12 degradation product did not show any biological activity in the growth of a vitamin B12 requiring microorganism, Euglena gracilis Z, and was not bound to hog intrinsic factor, a mammalian vitamin B12 binding protein. Intravenous administration of the compound (1 μg/day) for 7 days to rats showed that the compound neither has toxicity nor acts as a vitamin B12 antagonist in mammals. These results indicate that the conversion of vitamin B12 to the inactive vitamin B12 degradation products occurs in foods during microwave heating.

weird. thought i had posted here that i was trying a new twist on the regimen. not so much i guess.

anyway, hi all, just wanted to say that my spasticity remains gone on this new form of magnesium. also can take increased dose without laxative side effects. it's a winner!

this form was mentioned by shye and they just got it in recently at my local shop. i got the carlson brand. it is called albion process chelated magnesium glycinate. i'm part way through the bottle now and i can take 800mg per day, as i said with no laxative side effects. before, on mag citrate, the best i could hope for was 500mg or i'd be in trouble.

spasticity is a thing of the past (for me it was rather minor, mind you) and ladies, if you are pre menopausal magnesium in any form can work wonders on the cycle.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Any one currently on the Weldon antibiotic treatment?
Anyone who used it and had good results, ie, remission of symtoms, lesions or anything else?
Anyone still treating at Vanderbilt?
Just read about this treatment and wondering if it works or just helps.
Any comment appreciated.