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PostPosted: Wed Jul 09, 2008 8:17 am 
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cheerleader wrote:
Thanks for all the info, Nick.
I really appreciate your posts.
I began giving my 13 yr. old son vitamin D supplements when my husband was dx last year. This, and lots of so cal sunshine, should help protect his immune system.
My husband grew up in California, and spent alot of time outside in the sun. (He has the basal cells to prove it.) His serum vit. D levels are normal with supplementation. I continue to wonder if there is something interfering with vit D production and absorption in MSers. Perhaps a melanin disorder, cholesterol or liver problem? Could vit. D depletion be part of the autoimmune disease process?
AC


Hi AC

I'm glad someone does ;-)

You mention your man's levels are normal. Normal by what standards? A GP's or an evolutionary or immunoregulatory standard? The only way to pass judgement is to know what his actual measured serum concentration is. Which doesn't necessarily speak for his historical levels.

I agree that as a longtime resident of California he probably had ample opportunity for sun exposure and you say he did spend a lot of time outside so he is an unlikely candidate to develop MS (or any other AI disease for that matter). Yet there could still have been opportunites in his past to have had sub optimal levels of vitamin D.

His history of sun exposure probably endowed him with advantages though, such as a later age of MS diagnosis implying a immunosuppressive advantage, the status of his disease progression and degree of disabilty etc. Can you comment on this factors please?

To my knowledge a malfunction of his ability to produce vitamin D is possible though not probable. The higher his cholesterol the better for producing vitamin D so he would have to have very low cholesterol for it to be an issue. Again possible though not probable. Ditto with the liver although vitamin D is also produced elsewhere throughout the body. I guess your guy is just... lucky, as in bad luck.

Cheers
Nick


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 Post subject:
PostPosted: Wed Jul 09, 2008 3:41 pm 
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Location: southern California
Hi Nick-

Jeff was diagnosed last year. He has 20 lesions in his brain (mostly corpus callosum) and one on his cervical spine. He has not progressed since his first attack, however he has terrible residual fatigue, muscle spasms and leg pain since that attack. I believe he has had MS most of his adult life, which first manifested as depression in his late twenties. He is now 45 years old.

I began his vitamin D supplementation and many other supplements the first week after his diagnosis. Here's his story, and the program I put together for him:
http://www.thisisms.com/ftopict-4975.html

He lived in Rochester, NY and New York City six years during his late teens and early twenties- when we were in college and starting our careers, and I'm sure his vitamin D levels were low then. Lots of snow, not much sun. His GP says his serum levels of vit. D are high normal now, but I don't have the numbers in front of me.

Thanks for all you're doing to help the cause. I read many of your posts while putting together Jeff's program.
all the best,
the Aging Cheerleader

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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PostPosted: Thu Jul 10, 2008 11:17 am 
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AC

Wow, I can see who wears the pants in your household .... and who tells him when to take them off and put them on. Bravo for your proactive actions.

There are two points I'd like to comment on.

You write that Jeff has residual fatigue and don't state his dietary regime includes a prohibition of gluten. Is it accurate to say he still consumes gluten containg products, even if it is non-white flour?

Ron Hoggan believes partly digested proteins, called peptides, can pass through the intestinal wall, and into the circulation. In gliadin (i.e. gluten) there are five distinct peptides, all of which have been shown to be both psychoactive and to bind to opioid receptors in the brain. He believes this accounts for the overrepresentation of pshychiatric disorders (e.g. depression, schizophrenia) in celiacs and could account for such phenomena in MS as brain fog and fatigue.

Anecdotally, one of the first improvements I noticed after embracing diet revision was the markedly reduced/elimination of my consistently overwhelming fatigue.

Cheers
Nick


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PostPosted: Thu Jul 10, 2008 12:13 pm 
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Ha! No pants, here. I wear the apron. Since I'm chief cook and bottle washer in the family, Jeff lets me dictate nutrition. He trusts me to help him navigate this disease, as he truly does not have the time to. He's currently working on three TV shows and one film. He's taking control of his MS, by following the program I've spent hours and hours researching. We're a good team.

Jeff's been off gluten for years, first for weight maintenance, now for his MS diet. He also has been off simple carbohydrates...no pasta, bread, potatoes, sweets for at least ten years. He likes staying slender. Ah, vanity! I sometimes make side dishes of brown rice or pasta for myself and son, but Jeff does not indulge. His only carbs are veggies and some fruits. He even gave up wine :(

I'm glad the gluten free diet helped your fatigue...you're absolutely right about the peptides.

I attribute Jeff's fatigue to the location of his lesions...the corpus callosum connects the left and right hemispheres of his brain, and is in constant use as he composes music. His neuro couldn't believe his lack of disability after studying his MRI. He's rerouted his brain...would be a good case study for Oliver Sacks! Also, he does not sleep soundly, since his spasms continually kick him out of deep sleep. He's never truly rested, poor man.

Thanks for the personal input...nothing like having the internet to bounce around ideas across the continents. I truly believe the vit. D , diet, and supplements will allow Jeff many more years of healthy, productive living...and will benefit many others.
best,
the pantless cheerleader

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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 Post subject: Vit D
PostPosted: Mon Jul 14, 2008 6:02 am 
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Firstly, I received a number of complaints about the volume of postings by Lyon (Bob to his friends - I'm assuming he has more than one). He's now passed 3,000 posts - which is a travesty. Worse still - he's starting to appear on other MS websites - he's like a sexually transmitted disease. I'm going to have a word with Arron about charging Bob a $ a posting - proceeds go to MS research. That's fair isn't it?

More improtantly, I posted this under the recent EBV thread, but thought it worth posting separately. As usual, Vit D is good for MS with mice - which is strange because I thought mice were nocturnal creatures - don't see many sunbathing on a beach.

Vitamin D, hope for a new disease fighter for Multiple Sclerosis 14 July 2008

In a Newark laboratory, researchers watch as mice stricken with multiple sclerosis suddenly walk. They peer into microscopes and see the growth of breast cancer cells dramatically slowed.

They are examining, up close, the power of vitamin D.

"We're believers," said Sylvia Christakos, a longtime vitamin researcher at UMDNJ-New Jersey Medical School.

Many others are following. A spate of provocative studies shows the potential health benefits of vitamin D on everything from breast, prostate and colon cancer to auto- immune disorders such as Type I diabetes, rheumatoid arthritis, lupus and multiple sclerosis.

The so-called "sunshine vitamin" may even protect the heart.

Some researchers, citing widespread vitamin D deficiencies among Americans, call current federal guidelines outdated and argue most people need far more of the nutrient than they get from food, multi-vitamins and the sun.

Others say more research is needed before Americans start downing supplements or exposing unprotected skin to height-of-the- day sun, whose ultraviolet rays help create the vitamin.

Few researchers, however, have studied the nutrient more closely than Christakos.

"There is finally more of a recognition of the value of vitamin D to prevent various diseases," she said. "But it's cheap and over-the-counter so you won't turn on the television and see commercials pushing vitamin D."

In a review scheduled for publi cation this week in the online Journal of Cellular Biochemistry, Christakos and her team conclude proper blood levels of vitamin D can protect people from multiple sclerosis. The review said the nutrient may help maintain balance in the immune system.

The team looked at MS in mice, and found those treated early with an active form of vitamin D improved dramatically. The stricken mice, once paralyzed, were able to walk, though Christakos said that does not mean the same will happen for people with MS.

The lab has gone a step further to show how vitamin D may work on a genetic level. Working with researchers from Stanford University, they showed how vitamin D likely inhibits a key inflammatory response involved in MS.

The data on vitamin D is accumulating. For example:


A Canadian study found women with breast cancer were nearly twice as likely to see their cancer spread, and far more likely to die, if deficient in the vitamin.


A 2007 study in the American Journal of Clinical Nutrition concluded improving calcium and vita min D levels substantially reduces all cancer risk in post-menopausal women.


In last year's New England Journal of Medicine, researcher Michael F. Holick of Boston University School of Medicine cited a study that found elderly French women given 1,200 mg of calcium and 800 international units (IU) of vitamin D daily for three years reduced their risk of hip fracture by 43 percent.

Holick cited another study that found women who took more than 400 IU of vitamin D had a 42 percent reduced risk of developing multiple sclerosis. Another study found that 10,366 Finnish children who were given 2,000 IU of vitamin D per day during their first year of life and were followed for 31 years had their risk of developing Type I diabetes reduced by 80 percent.

Holick said Americans should take at least 1,000 IU of vitamin D daily as well as a multivitamin with another 400 IU. Christakos said vi tamin D supplements are especially important for those at risk of immune disorders, such as siblings of people with Type I diabetes or MS.

Government guidelines, however, recommend just 200 IU for those under 50; 400 for those 51-70; and 600 for those over 70.

Jennifer Koentop, a spokeswoman for the U.S. Department of Health and Human Services, said the government is negotiating with the Institute of Medicine, a national advisory organization, to review the vitamin D guidelines.

Humans once routinely absorbed vitamin D from the sun, but when jobs and society moved in doors exposure to sunlight dropped. Holick estimates half of all Americans are vitamin D deficient. Deficiency rates among African-Americans may be higher.

Reinhold Veith, a researcher at the University of Toronto, said people can safely put on a bathing suit and expose much of their skin, without sunscreen, for as little as five minutes several times a week to obtain vitamin D.

Most dermatologists disagree, however. The American Academy of Dermatology, on its website, said people who want additional vita min D should use supplements to prevent skin cancer and damage.

Debate continues over supplements, too. Laura Byham-Gray, associate professor of nutritional sciences at the UMDNJ-School of Health Related Professions, does not recommend higher doses.

"What we consider a vitamin D deficiency is still under debate," she said. She cites the hype that once surrounded vitamin E, which researchers later learned actually increased mortality.

Vitamin D proponents said as much as 10,000 IU daily will not cause toxicity.

"Policy makers want a high level of evidence before committing themselves," Veith said. "But all the accumulating evidence on vitamin D has been like a slow rising sun. When do you call it daytime?"

Source: nj.com © 2008 The Star-Ledger 14/07/08


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 Post subject:
PostPosted: Mon Jul 14, 2008 7:13 am 
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they should have specified why african americans might be at more risk of deficiency, because it applies to indoor, and/or covered, and/or darkly pigmented, and/or aged populations. if you are all of the above, you may want to start chowin down on some whale. or fish oil if you're picky.


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PostPosted: Mon Jul 14, 2008 12:34 pm 
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Last edited by Lyon on Mon Nov 28, 2011 2:11 pm, edited 1 time in total.

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 Post subject: Re: Vit D
PostPosted: Tue Jul 15, 2008 2:04 am 
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Lyon wrote:
Would that be in addition to the 10% of my net income that I already donate to thisisms?
Your a slippery one, 10% of nothing...


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PostPosted: Tue Jul 15, 2008 12:38 pm 
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Last edited by Lyon on Mon Nov 28, 2011 2:09 pm, edited 1 time in total.

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 Post subject:
PostPosted: Tue Jul 15, 2008 4:53 pm 
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Vitamin D deficiency is becoming a concern. Article in USAToday.

'Vitamin D tests soar as deficiency, diseases linked'

http://www.usatoday.com/news/health/2008-07-13-vitamin-d-tests_N.htm


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 Post subject:
PostPosted: Wed Jul 16, 2008 3:03 pm 
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jimmy

In answer to your question........ perhaps the african americans are more deficient as their skin pigmenation means they need more sun? And therefore once they move away from their natural environment (for want of a better term) they suffer a big loss in vit d provided by the lower sunlight levels. If that makes sense....??!!

My origin is meditterranean and my folks moved to the uk years ago so the same could apply to me, albeit at a comparatively lower rate.

J.


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PostPosted: Wed Jul 16, 2008 4:09 pm 
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Last edited by Lyon on Mon Nov 28, 2011 2:09 pm, edited 1 time in total.

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 Post subject:
PostPosted: Wed Jul 16, 2008 5:37 pm 
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i think people have different genetic disease islands that stick out when our nutrient waters recede. some small percent have the ms island, some have cancer island, some have 'more susceptible to toxins and/or infectious disease' island, etc. and the more kinds of imbalances you have, the more islands show up. which is why a deficiency of one thing in a large population can have a variety of resulting health effects. i don't think there's ever going to be one answer that addresses every single case of ms, and i don't think vitamin d deficiency would make everyone have ms. a human being is a pretty complicated system, there are too many variables to get it down to one. too reductionist to think otherwise, i reckon.


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 Post subject:
PostPosted: Wed Jul 16, 2008 10:53 pm 
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Cheer there are some proteins called heat sock proteins.
They regulate partly the way fatique comes and affect the body some hours after meals usualy with high ambients so if MSers eat frequently foods that contain them they are more prone to fatique in hot climates than other people, by the way bread is a big source of those proteins.


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 Post subject:
PostPosted: Thu Jul 17, 2008 2:53 pm 
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I'm sure it's not just vitamin D deficiency. I agree it's a mix of things.

With the neuroprotection that vit D offfers lacking, this is just one component of the slippery slope.


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