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PostPosted: Sun Aug 28, 2011 6:32 am 
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Thanks for the info Jimmylegs. I have my appt on Tues so I'll let you know what the actual cost is once I go. With any luck its not that much!


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PostPosted: Sun Aug 28, 2011 7:30 am 
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sweet, thanks, i'll watch for an update :)

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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


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PostPosted: Sun Aug 28, 2011 8:25 pm 
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Last time (in April) the test cost me $33 cad. No, MS is not one of the conditions that are on the list.


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PostPosted: Mon Aug 29, 2011 3:52 pm 
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good to know, it's in line with other tests not covered.

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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


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PostPosted: Thu Sep 01, 2011 4:43 pm 
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It appears that Vitamin D has a role in modulating the immune system, namely the adaptive response of induced regulatory T-cells. It seems that these induced regulatory T-cells migrate to areas of inflamation and shut down inappropriate immune responses.

Here is a paper that describes this:

http://www.ncbi.nlm.nih.gov/pubmed/21723567

Quote:
Although Vitamin D is best known as a modulator of calcium homeostasis, it also has immune modulating potential. A protective effect of Vitamin D on Multiple Sclerosis (MS) is supported by the reduced risk associated with sun exposure and use of Vitamin D supplements. Moreover, high circulating levels of Vitamin D have been associated with lower risk of MS. To gain more insight into putative regulatory mechanisms of Vitamin D in MS pathogenesis, we studied 132 Hispanic patients with clinically definite MS, 58 with relapsing remitting MS (RR MS) during remission, 34 RR MS patients during relapse, and 40 primary progressive MS cases (PP MS). Sixty healthy individuals matched with respect to place of residence, race/ethnicity, age and gender served as controls. Levels of 25(OH) Vitamin D and 1,25(OH)(2) Vitamin D, measured by ELISA were significantly lower in RR MS patients than in controls. In addition, levels in patients suffering relapses were lower than during remissions. By contrast, PP MS patients showed similar values to controls. Proliferation of both freshly isolated CD4+ T cells and MBP-specific T cells was significantly inhibited by 1,25(OH)(2) Vitamin D. Moreover, activated Vitamin D enhanced the development of IL-10 producing cells, and reduced the number of IL-6 and IL-17 secreting cells. Notably, VDR expression was induced by 1,25(OH)(2) Vitamin D in both activated and resting cells. Interestingly, T cells were able to metabolize 25(OH) Vitamin D into biologically active 1,25(OH)(2) Vitamin D, since T cells express 1α-hydroxylase constitutively. Finally, 1,25(OH)(2) Vitamin D also increased the expression and biological activity of IDO, triggering significant increase in the number of CD4+CD25+ T regulatory cells. Collectively, these findings suggest that 1,25(OH)(2) VitaminD plays an important role in T cell homeostasis during the course of MS, suggesting correction of its deficiency may be useful during treatment of the disease.


And here is an article that describes the regulating role of Vitamin D within the central nervous system:

http://www.ncbi.nlm.nih.gov/pubmed/21862439

Quote:
High exposure to vitamin D may protect against development and progression of multiple sclerosis (MS), possibly through the immunomodulatory properties of its biologically active metabolite 1,25-dihydroxyvitamin D. So far, most studies on the possible mechanisms for vitamin D involvement in MS have focused on immune modulation outside the central nervous system (CNS). However, vitamin D may also interfere with the pathophysiology of MS within the CNS. In this review, the potential presence and functions of vitamin D in the inflamed and healthy CNS are explored. We discuss that vitamin D, vitamin D binding protein (DBP), the vitamin D receptor (VDR) and enzymes needed for metabolism (CYP27B1) are present in the CNS. Both VDR and CYP27B1 are expressed on a variety of cells, including neurons, glial cells, and invading lymphocytes. Additionally, vitamin D has been postulated to play a modulating role in several key-processes in MS pathophysiology, including inflammation, demyelination, axonal damage, and remyelination. We conclude that a local role of vitamin D in the inflamed CNS is likely and potentially relevant to MS. Future studies should further characterize the impact of vitamin D on the local disease process of MS in the CNS.


From my own point of view, I initially was struck with ADEM which caused me to have serious optic neuritis in my left eye (I would say a pain scale of 8/10) as well as complete paralysis of my lower extremitis.

I recovered from this attack in about six months, but sustained permanent urinary retention and ED.

I continued to have "relapses" that consisted of hand tremmors, optic neuritis (6/10 pain scale), leg weakness, vomiting and double vision. All of these symptoms would come and go and they might not all happen at the same time.

Since I have been on the high dose Vitamin D, the only problems I have had are left eye pain as well as leg pain. These symptoms seem to start-up but then eventually go away in a few days. These symptoms are nothing that I cannot treat and eleviate with Excedrin Migrane and Advil.

Interestingly also, since I have been on this high of dosage, I have not had any colds or flu which I usually get in the winter months. In addition, it seemed I was comming down with a case of a urinary tract infection the other day (it felt like a had to urinate all the time), but these symptoms have completely gone away in two days. I currently have to self catheterize myself and have yet to have a UTI that required me to get antibiotics from my doctor.

So, from all of the information I have read, Vitamin D definitely has seemed to enable my immune system to be more effective at halted these
autoimune system attacks that I used to have as well as preventing me from acquiring viral and bacterial infections.

Here are a few charts that track both the pain behind my left eye (optic neuritis) as well as leg pain:

Image

Image


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PostPosted: Sun Oct 02, 2011 3:18 pm 
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Thanks for that,
how do you get that much vitamin D per day? I take 4x1000iu (the strongest ones ive found), how do you get that much? For all the vit D findings that are coming up i can't find a simple recommended dosage, and I don't understand most of the science above, sorry!

cheers, Lou


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PostPosted: Sun Oct 02, 2011 3:58 pm 
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Where are you Lou?

In the Uk you can get 5000 & 10,000iu gel caps. £25 for a years supply at 10,000 iu a day

http://www.jgsupplements.com/products/V ... tgels.html


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PostPosted: Sun Oct 02, 2011 4:03 pm 
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Loumalone wrote:
Thanks for that,
how do you get that much vitamin D per day? I take 4x1000iu (the strongest ones ive found), how do you get that much? For all the vit D findings that are coming up i can't find a simple recommended dosage, and I don't understand most of the science above, sorry!

cheers, Lou



There isn't one - its specific to the individual. Id go with the biggest dosage you can handle long term without significant sides if you have MS. Canadian trial administered 14000 iu a day for over a year without significant sides. I take 8-12,000 unless I sunbath and then I just do with whats in the multivitamin I take.

PS - listen to Aunty Jimmylegs and take your magnesium (at least 600mg a day) if you are going to high dose Vit D.


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PostPosted: Sun Oct 02, 2011 5:57 pm 
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dear old auntie jimmylegs :lol:

lou i buy liquid d3 drops 1,000,000IU/gm straight over the counter from a compounding chemist/pharmacist. i have to use a syringe to eke out doses on the order of 5000IU per drop.

the literature suggests that 'average joe' would use up about 4000IU of vit d3 per day. there's research out there that lets you calculate how long it will take to bring your level up to par at a given supplementation rate BUT you don't get good absorption if, like many ms patients, you don't have enough zinc. as detailed above.

and listen to mrb and your dear old auntie, and mag 'em ups ;)

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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


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PostPosted: Mon Oct 03, 2011 6:52 am 
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That's great lads, thanks, i've ordered the stronger stuff you mentioned above.
I'm in Ireland and can't get stuff i need locally but can easily order from the UK.

So now i'm now thinking i need to find out if i'm taking enough B complex!

Cheers again, Lou


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PostPosted: Mon Oct 03, 2011 3:14 pm 
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I should note that if one is considering megadosing with vitamin D3, then it's likely best to get your blood levels checked first and have them monitored after a period of time.

NHE


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PostPosted: Mon Oct 03, 2011 7:30 pm 
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refresh (see above):
"also the amount for each person to supplement does differ, depending on how far they are from optimal.

BUT, dose response also varies among individuals. you can optimize absorption for your age, skin colour, and level of exposure.

take a base line d3 level. select a daily dose for ex amount of time and test again for the amount of increase. helps to keep in mind there's a lag time from exposure to max serum level."

also fyi re personal xp - optimal zinc status optimizes d3 absorption :)

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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


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PostPosted: Tue Oct 04, 2011 1:05 pm 
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Here is a very encouraging recent scientific article about the mechanisms Vitamin D3 uses to reduce the immune system's attack in MS.

You can read the whole article (and listen to a podcast interview with the researcher) here:

http://jaxmice.jax.org/news/2011/MS_vitD.html

"Vitamin D, a Monkey Wrench in the MS Biochemical Machinery"

Quote:
In summary, the Christakos-Steinman team is the first to identify the molecular mechanisms by which vitamin D down-regulates autoimmune phenotypes characteristic of MS and EAE. They demonstrated that the active form of vitamin D represses IL17A transcription by blocking NFAT, recruiting HDAC, complexing with the VDR and sequestering RUNX1, and inducing FOXP3. Their work provides a much needed framework for initiating clinical trials to test the efficacy of vitamin D or its analogs in fighting MS and other autoimmune diseases.


And here is a different study that looks into the safety of taking high dose Vitamin D:

http://multiple-sclerosis-research.blog ... um-25.html

Quote:
These results demonstrate the safety of taking 5,000U or 10,0000U of vD3 per day and the importance of measuring blood levels of vD3 to ensure that the dose taken is adequate to achieve optimal blood levels.


Disclaimer: I'm not a medical professional, just a person with MS who takes high dose Vitamin D3. Please do your own research and draw your own conclusions. We are all responsible for our own health care decisions. Knowledge is power.

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PostPosted: Sun Oct 16, 2011 2:04 pm 
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Hi there,

I was wondering if any of you guys had any anecdotal or personal experience with vit D supplementing? Is it actually helpful in slowing the disease progression at it's early stages? What is a safe dosage to take on a daily basis? Is 10,000ui okay? 20,000?

What are you guys taking and has it had any effect?

Also I was wondering how many of you are using helminths to slow progression. Are they working? What types and how many?

Is there Anyone who lives in the UK and are involved in the Nottingham uni study??

Any help would be greatly appreciated!!!

VQ


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PostPosted: Sun Oct 16, 2011 4:10 pm 
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hi vq, in my xp, safe dosing depends on nutrient status. i was safe to take short term megadoses when i was zinc deficient, once i fixed the deficiency, it became dangerous to megadose.

someone i know has been having trouble getting d3 levels up taking 10,000 - 20,000 IU per day. zinc levels are on the low side and they had not been taking calcium, magnesium, or zinc. that has now been started up, and the daily d3 intake has been lowered. results of the new approach still pending. we'll see!

_________________
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


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