all things vitamin D

Discuss herbal therapies, vitamins and minerals, bee stings, etc. here

Postby mrbarlow » Fri Aug 12, 2011 10:59 am

euphoniaa wrote:
mrbarlow wrote:I would love to see some definitive research on what effect Vit D has post diagnosis and in respect to progression of disability.


Geez, I've been going steadily downhill since I started taking 4000 IU of vit D a little over a year ago - faster and faster since then. Same with Vit B12. :)

Seriously, I had negligible symptoms at diagnosis 8 years ago, but once I started dabbling in vitamins, supplements, made recommended changes to my already healthy diet, etc. - and finally quit smoking completely (was still puffing them some at dx) - I've become a major MS casualty.

I am NOT joking. Go figure.

P.S. And I also started making sure I get plenty of sun exposure - working in the yard, etc.
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Sorry to hear that. Reading your profile it wuld appear you have had MS for decades? Perhaps that affects the usefulness of Vit D as a therapy. In contrast my first symptoms were Spring 2010 and othe rthan a bout of Optic Neuritis havent got any worse.

I typically take 10,000 IU a day.
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Postby jimmylegs » Fri Aug 12, 2011 1:24 pm

hey there euphonia,

sorry to hear the vit D is not great. so tell me, do you balance your d3 intake with calcium magnesium and zinc?

around the end of 2007 i had the worst negative side effects from unbalanced high d3 intake. i was taking calcium and magnesium liquid, but i took it at the same time as the d3, and the d3 was 'hogging' all the calcium and magnesium, leaving no magnesium for any of its other ~299 jobs in my body.

i couldn't breathe properly, my throat did not work properly, and i thought i was going to just asphyxiate one day and that would be it. then a random pharmacy visit landed me with some advice: take magnesium. i said, i already do. and he said, take more, and take some at a diff time than d3.

worked like a charm! also, magnesium happens to be laxative in certain of its more insoluble forms, like magnesium oxide. even magnesium glycinate helps with regularity.

FYI
http://www.mbschachter.com/importance_o ... _human.htm

"Symptoms involving impaired contraction of smooth muscles include constipation"

i think that should say involving impaired *function* of smooth muscles but whatever.. after a quick skim, there seems to be a pretty solid overview there.

hth!
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Postby euphoniaa » Sun Aug 14, 2011 5:46 am

mrbarlow wrote:Sorry to hear that. Reading your profile it wuld appear you have had MS for decades? Perhaps that affects the usefulness of Vit D as a therapy. In contrast my first symptoms were Spring 2010 and othe rthan a bout of Optic Neuritis havent got any worse.

I typically take 10,000 IU a day.


Hi mr barlow,

Yes, I had MS for at least 30 years before dx, and Vit D deficiency could have been partially to blame originally. And if that's the case, it doesn't seem to explain why I had 30+ low disability years without Vit D supplementation and then major progression with it.

What bothers me is that I was feeling fabulously healthy at dx, due to improving my whole body/mood with diet/exercise/sleep/humor. And adaptation. :) I had always joked to friends that none of my body parts work exactly right, but they all work. Even though I had myriad, minor residual symptoms, I felt great! And I was 52! The real progression didn't even start until after that.

At the time, I was working full-time, wearing high-ish heels to work and walking about a mile in them during the course of every day. The second year after dx, I took LDN for a year, and halfway through it I needed a cane for balance and occasional tripping, so I lowered my heels a bit.

As I've tried one supplement after another, the progression seems to accelerate, and since my gait seems most affected, it has given me a good measure of the extent of deterioration. And since starting Vit D over a year ago, the speed of the downward spiral has been startling. I didn't expect a cure from vitamins, but didn't expect such a decline!

Before the D/B12 last spring (2010), I was still wearing low heels, even with the cane, but now my left leg really drags – even with flat shoes.

The biggest test is cutting my grass every week. I noticed a little leg shaking post yard work 8 years ago, but seldom any other time. Last summer (after D) was the first time I considered paying someone to cut it. This summer it's gotten so bad that my left leg can barely take me back from the garage after I mow. Next time I'll try it with my cane, and it feels like it may turn out to be my last grass mowing. Heat and general fatigue are very low on my list of MS concerns, and that's still the case.

Does it have anything to do with the vitamins? I may stop Vit D just to see if there are immediate changes, but probably not for long. I don't understand, since Vit D has actually "proven" (a relative term) itself in tests more than others – like in the above study link about "progression."

Here are some quotes from another study on the same link:

An International Journal of Medicine provide further evidence for the important preventive role of Vitamin D, not only in reducing the risk of MS, but also the severity and relapse rate for those living with MS.
********
‘These results indicate that low Vitamin D levels may be triggering the onset of relapses manifesting even 3 months later,’ the authors stated. They went on to say, ‘These considerations are extremely relevant as they highlight the need for well-powered randomized placebo-controlled clinical trials which would firmly prove or disprove the potential therapeutic effect of vitamin D in MS.’


And jimmy, as I mentioned, whatever else I'm taking/eating has obviously fixed the constipation issue – maybe because such a large percentage of my diet is full of magnesium-rich foods.

Or maybe I should start smoking and drinking again...or add more fats and sugar back into my diet... :D

Wishing better health and all kinds of stability to everyone this morning.
:)
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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jimmylegs » Sun Aug 14, 2011 6:59 am

fyi to all readers, any ms patient who is taking thousands of IUs of D3 daily and not getting magnesium intake at 10mg per kg body weight daily, to ensure a minimum serum level of 0.90mmol/L, is probably going to run into trouble with low magnesium symptoms.
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Postby euphoniaa » Sun Aug 14, 2011 2:34 pm

Okay, I have a new plan! :) Due to the Vit D discussion on this thread and my Dream thread (http://www.thisisms.com/ftopict-17534.html) I'm going to give up Vit D entirely for awhile and I'll post back here if it makes any difference at all. (I keep daily Symptom Charts.) I plan to give up everything else for awhile, too, but Vit D first.

If there's the slightest chance that Vit D is contributing to the dangerous reflux I'm experiencing, I've got to find out.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jimmylegs » Sun Aug 14, 2011 3:44 pm

hi e, what's the blood pressure situation you're dealing with? high or low?

jimmy
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Postby euphoniaa » Sun Aug 14, 2011 3:54 pm

jimmylegs wrote:hi e, what's the blood pressure situation you're dealing with? high or low?

jimmy


It's been high for 35 years and never really controlled, despite trying out many different med combos. Until...a month ago when I got frustrated with side effects and CUT the latest new med to almost nothing. I've now had one whole month of perfectly normal blood pressure (I check daily) - 130s/80s and sometimes 120s/70s.

I hate meds. :x And they don't seem to like me much either.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby jimmylegs » Sun Aug 14, 2011 4:10 pm

fyi

i really think magnesium is a big part of your puzzle, e.

the article below is mostly on track. however, AFAIK bottling has nothing to do with magnesium content of beverages.

the distinction should be city water vs ground water.

both sea water and fresh ground water contain magnesium.

city water has magnesium removed so that pipes don't get clogged.

that said, read on:

The Ignored Nutrient Magnesium and High Blood Pressure

...Paul Mason, a member of Life Extension, is concerned about getting the message across. Not only about magnesium and high blood pressure but the drinking habits of Americans which can cause heart disease and cardiovascular problems...

Paul Mason ... produces evidence based on extensive scientific data that magnesium is a, if not the missing link to heart disease, and high blood pressure control.

Examples of low Magnesium and High Blood Pressure with other complications

"Nature’s Calcium Channel Blocker" is the name they give to magnesium because it does what Calcium channel antagonists do, block calcium. It also modulates vascular tone.

Magnesium stimulates the production of nitric oxide, a mechanism at work when we exercise, helping to relax and dilate blood vessels. Not enough however causes a rise in calcium which restricts them...

...[adequate] levels of calcium but low levels of magnesium can cause persons to become obese especially concentrating most of the weight gain around the stomach. These people are highly likely to develop high blood pressure, diabetes and insulin intolerance, known factors contributing to heart attack.

Magnesium and High Blood Pressure - Foods and Supplements

Drinking bottled water for health is a well established and growing trend with many drawbacks. At most you will only find about 30% of magnesium RDA in bottled water, making it a less than adequate source. Finding sources to make up the remaining 70% could be a challenge.

Choosing foods containing magnesium not only can be frustrating but tiring work, trying to find and match up magnesium food sources as well as potassium food sources, and so on. ... farming methods and over-production have depleted the soils of vital minerals.

A wise and easier choice would be to supplement the diet with a balanced mineral, trace mineral and vitamin solution, eliminating the headache when planning daily menus.

You can buy a mineral supplement that contains all your minerals, trace minerals and vitamins in ionic form, so they can be absorbed through the intestines and into the cells.

Keep in mind, although there is an abundance of good quality potassium, calcium, vitamin d, and magnesium supplements on the market, they need to be in correct measurement in relation to each other, so exercise caution when choosing which supplement to take...
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Re: RE MS LINK TO IMMUNE SYSTEM, LACK OF VITAMIN D

Postby HarryZ » Mon Aug 15, 2011 5:45 am

seeva wrote:Hello friends there is a news todays sydney morning herald regaring m.s and luck of vitamin D.DR. graeme stewart of westmead millennium institute who led the Australian NewZealand study and DNA research find 57 genes linked to m.s and the study of mre than 1000 Australian has shown that m.s is primarily a disorder of immune system and vitamin D deficiency could be an important environmental factor in its development

regards
seeva :roll:


You would think that if genes played such a critical roll in MS, the 8% heredity risk of getting MS would be a lot higher than what has been determined after looking at hundreds of thousands of MS patients.

I sure hope this new discovery isn't leading us down another dead end path!

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Re: RE MS LINK TO IMMUNE SYSTEM, LACK OF VITAMIN D

Postby mrbarlow » Mon Aug 15, 2011 6:03 am

HarryZ wrote:
seeva wrote:Hello friends there is a news todays sydney morning herald regaring m.s and luck of vitamin D.DR. graeme stewart of westmead millennium institute who led the Australian NewZealand study and DNA research find 57 genes linked to m.s and the study of mre than 1000 Australian has shown that m.s is primarily a disorder of immune system and vitamin D deficiency could be an important environmental factor in its development

regards
seeva :roll:


You would think that if genes played such a critical roll in MS, the 8% heredity risk of getting MS would be a lot higher than what has been determined after looking at hundreds of thousands of MS patients.

I sure hope this new discovery isn't leading us down another dead end path!

Harry



Quite possibly Harry. Problem is all the money is in genetics right now with epidemiology being the cinderella of medical research.
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Re: RE MS LINK TO IMMUNE SYSTEM, LACK OF VITAMIN D

Postby HarryZ » Mon Aug 15, 2011 6:12 am

Quite possibly Harry. Problem is all the money is in genetics right now with epidemiology being the cinderella of medical research.


Yes, research funding in the medical world is critical and it is very important to be in the "cinderella" category. I can remember when stem cell research was there and the possibilities for MS treatment were rampant. That certainly hasn't progressed as fast as they wanted with very mixed results. Kind of sounds familiar when MS is involved, doesn't it?

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High levels of vitamin D linked to skin cancer, study

Postby MSUK » Wed Aug 17, 2011 1:13 am

Image

Higher levels of vitamin D, still within the normal range, are associated with an increased risk of nonmelanoma skin cancer, researchers reported.

In a cohort study, people with higher serum 25-hydroxyvitamin D (25(OH)D) were more likely to develop squamous cell or basal cell carcinoma, according to Melody Eide, MD, and colleagues at Henry Ford Hospital in Detroit.

But other factors – such as increased exposure to sunlight – probably complicate the relationship, Eide and colleagues reported online in Archives of Dermatology. Ultraviolet B light is known to cause skin cancer, but it also increases cutaneous vitamin D synthesis, the researchers noted, adding that the relationship between vitamin D and skin cancer is complex and studies have yielded conflicting results.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334
MS-UK - http://www.ms-uk.org/
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anyone from Ontario know about vit D testing?

Postby kibibikel » Fri Aug 26, 2011 8:03 pm

Hey all,

Was just reading that OHIP is no longer providing free vitamin D testing in Ontario unless you fall under certain categories. Does anyone know if MS falls into one of the categories? Or how much it is if it isn't? I've only been diagnosed since April, but after reading some of the posts on here about vitamin levels and how nutrition has really helped quite a few people I've decided to really try and get that all figured out.

Thanks in advance for the help!!

Kelsey
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Postby oreo » Fri Aug 26, 2011 8:12 pm

Last I heard, no it doesn't.
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Postby jimmylegs » Sat Aug 27, 2011 7:06 am

hey there kelsey

yea so many people were getting tested, OHIP decided it was too expensive to provide for free.

a panel of 'experts' (none of whom seem to be known canadian vit D researchers) decided to ignore 30 years of literature on links between vit D and the immune system and suggest that the test doesn't matter for cancer, alzheimers, diabetes, or ms patients, etc.

if you have bone diseases like osteoporosis, or osteomalacia i think? etc on your file, you can still get the test covered.

if you are on meds that mess with vit D metabolism, you can still get the test covered.

i have a vit D3 lab requisition on my fridge and am curious to see how the next trip to the lab will pan out.

most tests that aren't covered that i have had done in the past, ranged from $30 to $40. i'd be curious to hear what ontario labs are charging for the vit D3 tests.

also if you doctor will not do a serum D3 requisition for you, you can pay to go to a naturopathic doctor who can do a requisition.

by the way NDs can do requisitions for all the nutritional blood tests, but OHIP doesn't cover any tests ordered by NDs. it's an optional route if you have the $$$ and the doc will not order the lab work for you.

HTH
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