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Sun exposure, Vitamin D intake and progression to disability

Postby MSUK » Wed Aug 10, 2011 3:54 am

Sun exposure, Vitamin D intake and progression to disability in progressive MS

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Summary: This study assessed vitamin D-related exposures from childhood to disease onset and their associations with MS progression among war veterans in the MS Surveillance Registry, based on self-reporting of sun-exposure and age at disability milestones.

Low average sun exposure in the fall/winter before disease onset was associated with an increased risk of progressing more quickly, whereas use of cod liver oil during childhood and adolescence was associated with a reduced risk. The authors propose that exposure to vitamin D before MS onset might slow disease-related neurodegeneration and thus delay progression to disability among patients with the progressive subtype.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334
MS-UK - http://www.ms-uk.org/
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RE MS LINK TO IMMUNE SYSTEM, LACK OF VITAMIN D

Postby seeva » Wed Aug 10, 2011 8:49 pm

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
For this study i gave my blood few years back Prof Graeme Stewart and his asst. dr. david booth and my neurology DR. Steve Vucic all are in the study when i see my dr on end of the month i can find more infomations.
regards
seeva :roll:
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vit d?

Postby Needfulthings » Thu Aug 11, 2011 2:41 am

that is what prompted my doctor to push for a more agressive search for an MS dx my test results for Vitamin D was 9 (think I mistakenly said 14 in another post oops sorry) and <4 for the other im now on 50000 iu per week of Vitamin D......do you know of a connection with Vitamin D deficiency and weight loss Im losing weight very quickly lately
<div>MAY GOD BLESS YOU</div><div><strong><br /></strong></div><strong>Donna Giaquinto</strong>
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Postby jimmylegs » Thu Aug 11, 2011 7:16 am

have you checked out the zinc connection, need?

if not, here is some info:

i used to have low D3 and asked the hospital how to get my level up 50nmol/L fast. they said take 50,000IU per day x 10 days. i did so and my level went from low 70s to 149.

later i realized i was zinc deficient (ie 8.6 umol/L, normal range is 10-20, some sources say 11.5-18.5, and in the literature healthy controls sit in a tight average around 18.2 umol/L).

when i was zinc replete i got a d3 test of 103 nmol/L. i wanted to be closer to 150 so i decided to do 50,000IU d3 per day x 8 days. my followup d3 level was 271 nmol/L.

so my dose response basically tripled.

weight loss is a symptom of zinc deficiency, and zinc is known to be low in ms patients.

zinc is involved in over 300 process in the human body, so if it is involved in your low d3 levels, it could be affecting quite a number of other things you would not think were connected.

for instance my low uric acid level, which was stuck at or below the ms average for years, suddenly bounced up to the levels seen in healthy controls, after i corrected my zinc deficiency.

world's healthiest zinc foods:
http://whfoods.org/genpage.php?tname=nutrient&dbid=115

certain drugs and foods impair zinc absorption, such as bread for example (gluten grains in general). phytates are also a problem for zinc absorption.

i saw one study where they took celiac patients and healthy controls and put both groups on a gluten free diet. serum zinc levels increased in both patients and controls.

what's your diet and supplementation and medication regimen like? there might be some clues there. for my part, prior to dx i had very little bioavailable zinc in my diet, and at the same time, ate plenty of foods that would impair zinc absorption. recipe for disaster!
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Postby mrbarlow » Fri Aug 12, 2011 9:21 am

I would love to see some definitive research on what effect Vit D has post diagnosis and in respect to progression of disability.
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Postby euphoniaa » Fri Aug 12, 2011 9:38 am

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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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 daverestonvirginia » Fri Aug 12, 2011 11:23 am

If you have not had your vitamin d level checked, I would do that. I was taking 4000 IU a day also, had my level checked and it was still very low. We should be looking for a vitamin d level of 125nmol/l. Everyone is a little different so the vitamin d level tests are important.
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Postby euphoniaa » Fri Aug 12, 2011 11:57 am

daverestonvirginia wrote:If you have not had your vitamin d level checked, I would do that. I was taking 4000 IU a day also, had my level checked and it was still very low. We should be looking for a vitamin d level of 125nmol/l. Everyone is a little different so the vitamin d level tests are important.


About a year ago in May, I convinced my GP to test me for Vit D & B12. The numbers for both were VERY low. I was given giant Vit D caps (10,000 IU?), but was too scared to take them :)(major medphobia).

Instead I started taking Vit D 1,000 IU at a time, quickly working up to 4,000/day. I also had a quick B12 shot, then added 1000 B12 when I was sure Vit D wasn't going to kill me. (REALLY medphobic... :) )

Within a month or two I was tested again and both levels were fine. I've continued to take both D & B12 anyway, but they don't make me feel particularly good. Vit D is VERY constipating, and I have various irritating issues from B12 that I've written about elsewhere.

I know it's the Vit D, because I had never had constipation in my life (had the opposite) until the week I started Vit D. I assume the B12 has regulated that, because now the combination makes me 'relatively' normal.

Actually, I don't think many of my friends/acquaintances consider anything about me or my personality "normal", but then they don't ask me about my current bowel habits, or maybe they would. :)
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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 mrbarlow » Fri Aug 12, 2011 11:59 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 2:24 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 6:46 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 7:59 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 3:34 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 4:44 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 4:54 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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