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As discussed elsewhere on this forum, high dose biotin is being trialled as a treatment for progressive MS under the name MD1003. High dose biotin is also relevant to treating hair-loss.

I started dosing myself with high-dose biotin about a month ago to see if it would help with MS symptoms. In case it is helpful to anyone else, here is what I learnt and how I go about it:

Background
- Biotin is another name for Vitamin B7. The Germans refer to Vit B7 as Vitamin H - for 'Haar & Haut" as it has a beneficial effect on both.
- The Vitamin B group is water-soluble, so the body easily gets rid of any excess. This means that
a) it is quite a safe supplement to take and
b) that you need to take it regularly and - if it to be really effective - throughout the day.
- The amount of Biotin used in the MD1003 trial was 300mg a day. Most of the 'high-strength' Biotin supplements you can buy are 10,000 mcg so you would need 30 tablets a day to give you the same dose that was used in the trial.
- The tablets contain a lot of fillers. With 30 tablets a day you would probably ingest more of these fillers than would be good for you. It is better to buy the biotin as pure, pharmaceutical grade powder.

What to buy
Stockists include US-based Pure Bulk and Bulk Powders. Make sure you buy the pure Biotin, and not the cheaper 1%
Biotin that is also available. For a three month supply, you would need to buy 25g.
- In the MD1003 trial, my understanding is that subjects were also given 1500 mg of Thiamine (Vitamin B1) a day. Thiamine is apparently very important for energy and might make a real impact on MS-related fatigue. Apparently we should go for Thiamine Mononitrate.
- You will also need to purchase a set of micro scales, along the lines of these:
https://www.amazon.co.uk/Ascher-Portabl ... way&sr=8-1

How to take
- Place a small piece of paper on scales, which you have set to measure in 'g' for grams. Turn on and wait for scales to show '0'. Use the tip of a knife or similar to weigh out 0.3g of biotin. Use paper to transfer into bottle or jar.
- If using thiamine as well, repeat procedure to measure out 1.5g and add to bottle or jar.
- Add water (powder dissolves readily in warm (not hot!) water.
- Take sips throughout day. That way you get your vitamin B in slow release form.

MedDay, who manufacture MD1003, apparently advise stopping the supplements of high-dose biotin some days in advance of any blood tests as this might interfere with the results. I came across a suggestion that 4 days might be enough.

There is apparently a very active Facebook page on this theme:
https://www.facebook.com/groups/BiotinForProgressiveMS/" onclick="window.open(this.href);return false;
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Did you manage to source the Biotin and Thiamin in the UK?

Be really interesting to hear how you get on.
OMS since 17/08/2015
Diagnosis 28/05/2015 - 22/09/2015
Hello Diggity,

Unfortunately I have not managed to find a UK suppler of biotin powder. Apparently we need the pharmaceutical grade, not just 'pure'. I have written to Dickson's Chemist in Glasgow (whom I first learnt about from you) twice to see if they might be able to supply it, but not had a reply.

So although It does seem rather silly to have to order a simple vitamin from the other side of the world, I ordered from BulkSupplements.com. The postage was not expensive. There was no import duty but I did have to pay VAT + a charge to the Post Office for taking this money off me. If I re-order, I thought I might ask Pure Bulk to label the package 'Food Supplement' or something like in the hope that it might avoid attracting VAT.

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
I did 300mg of Biotin and took one three times daily and I got them from a compound chemist. I did this for eleven months and then I stopped because I felt the Biotin made me weaker and more fatigued so I became more reliant on my wheelchair, whereas before the Biotin I was a bit more mobile.
Roses
My neuro emailed me about this study a few months ago. Since then I have been taking the 10,0000 mcg pills(only 5 though). I will follow your instruction you provided. Have you noticed any positive effects? Thank you.
I am only one month into my high dose biotin experiment so it's probably too early to judge the positive effects. There's definitely an improvement on the energy front. I am currently averaging 14 hours of moderate activity a day (including 5-6 hours of outside land-based work) without feeling tired or needing to rest, and that's a lot better than things used to be.

The latest report of the clinical trial into high-dose biotin appears to show only a subset of the participants lowering their disability score, so I am not neccessarily expecting the biotin supplementation to work wonders for me but plan to stay with it for 6-9 months to give it a fair trial.

If I do eventually stop it, I will almost certainly continue the B1. This is much less expensive than the biotin and seems to make a big difference to fatigue. I could well imagine high dose B1 supplements helping lots of people with MS who suffer from fatigue.

Jette

PS And my hair is growing like crazy!
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
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