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Re: Tr1 Regulatory Cells and Vitamin D

Postby mrbarlow » Sun Oct 02, 2011 4:03 pm

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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Re: Tr1 Regulatory Cells and Vitamin D

Postby jimmylegs » Sun Oct 02, 2011 5:57 pm

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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Re: Tr1 Regulatory Cells and Vitamin D

Postby Loumalone » Mon Oct 03, 2011 6:52 am

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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Re: Tr1 Regulatory Cells and Vitamin D

Postby NHE » Mon Oct 03, 2011 3:14 pm

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.

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Re: Tr1 Regulatory Cells and Vitamin D

Postby jimmylegs » Mon Oct 03, 2011 7:30 pm

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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Research study: Vitamin D3 down regulates Interleukin 17

Postby ThisIsMA » Tue Oct 04, 2011 1:05 pm

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"

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

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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Vitamin D And helminth questions!!

Postby Vikingquest » Sun Oct 16, 2011 2:04 pm

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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Re: Vitamin D And helminth questions!!

Postby jimmylegs » Sun Oct 16, 2011 4:10 pm

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!
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Re: Vitamin D And helminth questions!!

Postby mrbarlow » Mon Oct 17, 2011 1:21 am

Im on Helminthic Therapy since February 11 and had a top up in August.

I have only had one acute attack and that was ON in November 2010. Since then overall I have got much better but this maybe down to Rebif / Supplements / diet.

So to date no acute attacks. Do get some minor transient symptoms - slight blurring in left eye. Today my left arm feels strange but is quite funtional.
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Re: Vitamin D And helminth questions!!

Postby daverestonvirginia » Mon Oct 17, 2011 6:51 am

I have been taking vitamin D supplements for about six years since I was dx. I believe it has helped me. I take 6,000iu's a day, and I get my vitamin d level checked once a year. Everyone is a little different as to how much vitamin d they need so I recommend yearly testing. Optimal level of circulating vitamin D is between 100 and 150 nmol/l (nanomols per litre).
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Re: Vitamin D And helminth questions!!

Postby euphoniaa » Mon Oct 17, 2011 11:21 am

Vikingquest wrote: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



Hi VQ,

Here's a link to a thread about a recent vitamin D study where I gave my own personal experiences - lots & lots of them. :smile: My progression was very slow - until I started vit D.
general-discussion-f1/topic17545.html
And there are LOTS of vit D studies on Squiffy's original link – to the msrc website: http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334

And here's a quote from me on that thread:
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.

As for the worms, no experience there. I still have trouble even reading about those here. :smile:

Good luck!
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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MS patients to be given vitamin D to test sun's effect

Postby MSUK » Mon Oct 17, 2011 11:34 pm

MS patients to be given vitamin D to test sun's effect on the condition

Image

Patients with early-stage multiple sclerosis are to be given vitamin D supplements as part of a trial to determine if a lack of sunshine may contribute to the illness.

It has long been noted that incidences of MS increase the further away from the equator people are, although doctors are not sure whether the reasons are environmental or genetic, or a combination of both.

A previous study examined discrepancies between MS rates in Donegal, which has some of the lowest sunshine levels in Ireland and has high rates of MS, and Wexford, which is the sunniest part of the country and has lower levels of the disease. The study concluded that sunshine may play a role, but it may also be down to genetics.

Consultant neurologist Dr Chris McGuigan, who works in St Vincent’s Hospital, said the study, which is scheduled to begin before the end of the year, will be carried out to see if vitamin D supplementation can stop the next “event” or seizure.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/1334
MS-UK - http://www.ms-uk.org/
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Re: Vitamin D And helminth questions!!

Postby ErikaSlovakia » Thu Oct 20, 2011 5:07 am

jimmylegs wrote: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!

It is perhaps me. I will have my control blood tests in about 2 weeks.
I just have difficuilties with nausea after taking Zinc after lunch (25mg). I am fine taking 25 mg after dinner. I think I will try 50 mg in the evening only as I would like to funktion during the day as well. I teach 1 English lessen 3 times a week - my only job.
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- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Re: Vitamin D And helminth questions!!

Postby jimmylegs » Thu Oct 20, 2011 2:32 pm

yep i was talking about you erika :) wow that's weird that only 25mg makes you nauseous. i definitely get sick from 100mg but i can take 50 no probs. sure try taking all 50 after dinner and see how it goes!

when i had some of my worst symptoms, i was taking vitamin d3 but no calcium, magnesium, or zinc. i gave myself a magnesium deficiency (i didn't know at the time so no bloodwork unfortunately) because of high dosing just d3. i was horribly sick from the d3 until i got on track with balancing it with other necessary minerals.

in hindsight i would say taking d3 did indeed increase my 'progression' but it was a reversible side effect of not taking it properly.
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Re: Vitamin D And helminth questions!!

Postby jackD » Thu Oct 20, 2011 7:18 pm

It seems that 10,000 IUs of Vitamin d3 is the upper limit recommended for this supplement.

jackD

Am J Clin Nutr. 2007 Jan;85(1):6-18.

Risk assessment for vitamin D.

Hathcock JN, Shao A, Vieth R, Heaney R.

SourceCouncil for Responsible Nutrition, Washington, DC 20036-5114, USA. jhathcock@crnusa.org

Abstract
The objective of this review was to apply the risk assessment methodology used by the Food and Nutrition Board (FNB) to derive a revised safe Tolerable Upper Intake Level (UL) for vitamin D. New data continue to emerge regarding the health benefits of vitamin D beyond its role in bone. The intakes associated with those benefits suggest a need for levels of supplementation, food fortification, or both that are higher than current levels.

A prevailing concern exists, however, regarding the potential for toxicity related to excessive vitamin D intakes. The UL established by the FNB for vitamin D (50 microg, or 2000 IU) is not based on current evidence and is viewed by many as being too restrictive, thus curtailing research, commercial development, and optimization of nutritional policy. Human clinical trial data published subsequent to the establishment of the FNB vitamin D UL published in 1997 support a significantly higher UL. We present a risk assessment based on relevant, well-designed human clinical trials of vitamin D.

Collectively, the absence of toxicity in trials conducted in healthy adults that used vitamin D dose > or = 250 microg/d (10,000 IU vitamin D3) supports the confident selection of this value as the UL.

PMID: 17209171 [PubMed - indexed for MEDLINE]
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