Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Wed Jan 02, 2013 6:29 pm

I want to add a little from my own experience, keeping in mind that a. I have an MS dx and b. I have a CPn dx.
I have been on the Wheldon/Thibault protocol for just over 3 months and at about 1 month in I began increasing my Vit D supplement intake.
I had been using a combination of Vit D sources which came from various combinations of other Vits and Minerals that I estimate at 1500. The only dose that was available was 50,000 units which was recommended at 10 days intervals.
Three days after the dose I had a huge Herxheimer type reaction which was very debilitating. So I read up and found that the Vit D resets the Apoptosis when there is a stealth bacteria that has the ability to modify the DNA of its host cell. So I have decreased the Vit D boosts and now I have worked up to 25,000 every 10 days with less effect.
What I am wanting to warn here is that the response to increasing Vit D intake may have side effects that are confusing the need to correct Vit D levels. I also have issues with the ABx causing photo sensitivity and I have to avoid direct Sunlight so its a Catch 22, especially for the PwMS to learn what is happening because most Dr's won't understand what is going on, even Specialists are challenged by side effects and the cause.

**JimmyLegs is there a combination for Vit D to make it bioavailable and other Vits or minerals that it needs as a combination. I have read that calcium is necessary.
Also is there a test for Zinc?
I also hear that in NZ selenium is naturally low because of our soil type, is that something that can be tested for? or that can be an issue?

;)
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NHE » Thu Jan 03, 2013 1:36 am

Squeakycat wrote:EJC, just happened on the following in the Endocrine Society review. It shows that you can safely take high doses as they are recommending in certain situations. These are doses designed to raise low levels, not daily maintenance doses:
Alternative strategies for nursing home residents include 50,000 IU of vitamin D 2 three times per week for 1 month (134) or 100,000 IU of vitamin D every 4 months (61).

That works out to a daily equivalent of 21,428 IU every day for a month.


That's vitamin D2 which is ergocalciferol. It's less effective than vitamin D3 which is cholecalciferol. Therefore higher doses of D2 might be needed to achieve a similar effect compared to D3.
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Thu Jan 03, 2013 2:31 am

NHE wrote:That's vitamin D2 which is ergocalciferol. It's less effective than vitamin D3 which is cholecalciferol. Therefore higher doses of D2 might be needed to achieve a similar effect compared to D3.

Citations please? I have been looking at some contradictory studies on this as well as calcitriol which is being used in a lot of the cancer trials.

Thanks
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NHE » Thu Jan 03, 2013 2:52 am

Here's an article from Medscape. You'll need to sign up for a free
account in order to view it.
http://www.medscape.com/viewarticle/589256_4

Here's a review from Vieth et al.
http://www.ncbi.nlm.nih.gov/pubmed/22552031

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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Thu Jan 03, 2013 4:06 am

NHE wrote:Here's an article from Medscape. You'll need to sign up for a free
account in order to view it.
http://www.medscape.com/viewarticle/589256_4

Here's a review from Vieth et al.
http://www.ncbi.nlm.nih.gov/pubmed/22552031

NHE

Thanks. I've read the Vieth pieces. In 2006 he said toss D2, there was no role for it. Now he is saying we need more studies to find out how they differ in terms of how they are metabolized and whether there are health differences as a result of these metabolic differences.

That sounds to me as though the jury is still somewhat undecided. They know the D3 raises 25(OH)D levels more effectively than D2, but they don't know if that is a health benefit since there may be some reasons for the difference that do have a direct health effects.

Its late, that's not as clear as it should be. :>)
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Re: Vit D3 Supply from iHerb in California

Postby MarkW » Thu Jan 03, 2013 4:38 am

My logic of taking 5,000 iu a day stems from human evolution. Humans (spreading out from East Africa) were hunter-gatherers then farmers who lived in sunlight for much of their lives. They received Vit D3 (not D2) from sunlight in a fairly even manner. I am not surprised by NZer1's comments as 50,000 iu at one time would be unusual for the human body to cope with.
Simply I recommend that we repeat the Vit D3 dosage received natually by our ancestors. I realise that buying D3 in an oily form (helps adsorption) is not easy in many countries including the UK so I posted the info below.
My recommendation on D3 dosage is well researched (I said on my first post I do not give lots of references but read page 12 of the thread if you need references). Also do not forget JimMyLegs posts on minerals if your D3 level does not increase after 10,000 iu a day. Vit D3 is cheap (14 GBP for a years supply at our MS Therapy Centre near Oxford) so it makes sense ecomonically.
MarkW

MarkW wrote:I use iHerb.com in California, USA for supply of Vit D3 5,000iu as high strength are not available in UK and many countries in Europe. Many brands of D3 are stocked by iHerb (http://www.iherb.com/Vitamin-D-5000-IU).
My iHerb code- WAL561 -is now worth $10 off for anyone shopping at iHerb for the 1st time. You will save $10 off your 1st iHerb purchase of $40 or more! Or $5 off on smaller orders.
You may find D3 cheaper (please let me know if you do). iHerb ships to Europe, but remember you may have to pay local sales tax (VAT is 20% in UK).
I will not benefit from anyone using this code as all discounts I receive are passed on to pwMS at OMSTC (http://www.omstc.org).
MarkW
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http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby MarkW » Thu Jan 03, 2013 4:57 am

Squeakycat wrote:
NHE wrote:That's vitamin D2 which is ergocalciferol. It's less effective than vitamin D3 which is cholecalciferol. Therefore higher doses of D2 might be needed to achieve a similar effect compared to D3.

Citations please? I have been looking at some contradictory studies on this as well as calcitriol which is being used in a lot of the cancer trials.
Thanks


Hello NHE and Sweakycaat,
From my reading I picked up that D2 is less well adsorped than D3 in some people. Also D2 is not converted to D3 in some people. My training as a management consultant meant I stopped collecting information on D2 as the data is more difficult to assess. OK not strictly scientific but it works in business.
Happy researching,
MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Vit D3 Supply from iHerb in California

Postby Squeakycat » Thu Jan 03, 2013 5:20 am

MarkW wrote:My logic of taking 5,000 iu a day stems from human evolution. Humans (spreading out from East Africa) were hunter-gatherers then farmers who lived in sunlight for much of their lives. They received Vit D3 (not D2) from sunlight in a fairly even manner.


Standing naked at noon with full UV-B exposure as you would have in East Africa year around, your body would make 1,000 IU a minute, but only up to a limit of 20,000 IU for the day unless you have greater need, the most studied being pregnancy and bone growth where the body allows you to make more.

So wouldn't natural or evolutionary history suggest that 5,000 IU is on the low end while the "natural" number is closer to 20,000 or even half that.

This translates into 25(OH)D levels around 230 nmol/L (88 ng/ml) which may well be where the base line is. It could be that people with a vitamin consuming disease such as MS might even need more than this.

But this really doesn't tell us how much someone with MS needs, how the need varies between sexes, ages, MS activity levels and so on.

Sadly, it seems that none of the research really answers questions like this. People keep concluding that Vitamin D doesn't work when what might not be working is their studies which only prove that the low levels they have tested are probably inadequate.

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Re: Vit D3 Supply from iHerb in California

Postby EJC » Thu Jan 03, 2013 6:08 am

MarkW wrote:I realise that buying D3 in an oily form (helps adsorption) is not easy in many countries including the UK so I posted the info below.


I found a firm on eBay UK selling the brand you mentioned earlier in this thread.

I ordered a 360 day supply of the Healthy Origins Product in 10,000 iu liquicaps for £31 incl delivery.

http://stores.ebay.co.uk/SupplementsThatWork

The 5000iu caps are £14.96 + P&P

I do need to know what multivitamins/minerals Emma should be balancing this with though.
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Thu Jan 03, 2013 11:50 am

I remember looking at the Vit D Council US web site years ago and they did talk about the conversion of D2 to D3 so that it is bio available.
The other thing that we have to remember is that different pigments in the skin alter the Natural absorption of Sun derived Vit D. So ethnicity will have and effect as much as location on the Planet. Down under we have a higher risk from Sun exposure because of all sorts of things from clearer skies to sun angles.
I think there have been studies on Vit D levels of people around the Globe which would give some indications regarding demographics as well as hereditary issues.

I will look into this later when there is more time.

I was hoping that George Jelinek, Terry Wahls and Ashton Embry would drop in with some more data for us to ponder. ;)

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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Thu Jan 03, 2013 10:41 pm

NZer1 wrote:So ethnicity will have an effect as much as location on the Planet. Down under we have a higher risk from Sun exposure because of all sorts of things from clearer skies to sun angles.

Nigel,
Yes, the darker the skin, the longer it takes to make the same quantity of vitamin D from sun exposure. Latitude has much more effect because if you are north (or in your case, South) of the 34th parallel, there will be no UVB radiation in the winter months, none. So whether your skin is as white as snow or black as the night, you won't be able to make any vitamin D through solar exposure so latitude has a major role compared with skin color.
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Fri Jan 04, 2013 12:25 am

Interesting article that links Vit D levels to infections. Makes sense and there has always been attempts to link disease to MS, just the wrong angle has been used in the logic,
From FB;
CPn - Chlamydia / Chlamydophila Pneumoniae shared a link.
31 December 2012
An interesting medical journal on Vitamin D. S & A

"Vitamin D research is discussed in light of the hypothesis that the lower average levels of vitamin D frequently observed in autoimmune disease are not a sign of deficiency.
Instead, it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes."

http://autoimmunityresearch.org/transcr ... eprint.pdf
autoimmunityresearch.org
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Fri Jan 04, 2013 1:06 am

MS Australia is running the world first randomised controlled trial to see if Vitamin D can actually prevent MS after an initial incident, there are different dose levels being trialled so some clarity might come from that :

http://www.msra.org.au/australia-rolls- ... tion-trial
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Vit D3 Supply from eBay in UK

Postby MarkW » Fri Jan 04, 2013 1:31 am

EJC wrote:I found a firm on eBay UK selling the brand you mentioned earlier in this thread.
I ordered a 360 day supply of the Healthy Origins Product in 10,000 iu liquicaps for £31 incl delivery.
http://stores.ebay.co.uk/SupplementsThatWork
The 5000iu caps are £14.96 + P&P

I do need to know what multivitamins/minerals Emma should be balancing this with though.


Thanks for the info EJC. I would check that the eBay importer know how to store the D3 as the price is close to what I would pay direct from iHerb.

I would not add any extra vit/min at this stage, as it complicates assessing changes. If Emma's D3 level is not over 125mmol/L with 10k iu/day then consider the points that Jimmylegs made on minerals. Your GP is able to conduct a test for D3 in blood on the NHS (mine does). I suggest 2 months of D3 then a test, maybe Feb/Mar, as we are unlikely to get any sun before then in southern England.
MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby MarkW » Fri Jan 04, 2013 1:55 am

NZer1 wrote:MS Australia is running the world first randomised controlled trial to see if Vitamin D can actually prevent MS after an initial incident, there are different dose levels being trialled so some clarity might come from that :
http://www.msra.org.au/australia-rolls- ... tion-trial


The MS Aus trial in probably intervening too late in MS development. I suggest that everyone who gets Optic Neuritis is tested for D3. Supplement D3 blood levels to above 125mmol/L (50ng/ml) and compare results with a matched population on eventual development of MS. The paper below helps explain my logic.
Trials also need to look for young people who get EBV (one of the factors in MS development).
MarkW

----------------------------------------------
Acta Neurol Belg. 2012 Dec 19. [Epub ahead of print]
Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double blind, randomized, placebo-controlled pilot clinical trial.
Derakhshandi H, Etemadifar M, Feizi A, Abtahi SH, Minagar A, Abtahi MA, Abtahi ZA, Dehghani A, Sajjadi S, Tabrizi N.
Source
Isfahan Eye Research Center (IERC), Feiz Hospital, Isfahan University of Medical Sciences, SHARNOS Co. No. 9, Boroomand. Seyed-Alikhan, Chaharbagh Abbasi, 81448-14581, Isfahan, Iran.
Abstract
Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.
PMID: 23250818 [PubMed - as supplied by publisher]
----------------------------------------------------------
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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