biotin and PPMS

Just in case anyone hasnt seen this 2016 paper reporting study on the efficacy of high dose biotin (MD1003) as treatment for PPMS. Seems pretty impressive.

Results:

A total of 13 (12.6%) MD1003-treated patients achieved the primary endpoint versus none of the placebo-treated patients (p = 0.005). MD1003 treatment also reduced EDSS progression and improved clinical impression of change compared with placebo. Efficacy was maintained over follow-up, and the safety profile of MD1003 was similar to that of placebo.

Conclusion:

MD1003 achieves sustained reversal of MS-related disability in a subset of patients with progressive MS and is well tolerated.

http://journals.sagepub.com/doi/full/10.1177/1352458516667568

1 Like

Hi Bob,

I’ve been taking biotin for a while now, the improvement was slow but I no longer have constant headaches, my feel are no longer blocks of ice, I no longer get restless legs and my walking has improved immeasurably. I know it doesn’t work for everyone, I’d say it took about a year for things to improve, although I think it’s generally considered to be nine months. I shall definitely continue with it. I’ve heard that some people feel less fatigue, sadly it hasn’t done that for me!

Nina

2 Likes

Im glad biotin helped Nina. I add it to my porridge, along other anti-MS ingredients, such as tumeric, vit enriched soy milk, fruit, and walnuts (high in omega 3 I think). tbh I would prefer just porridge! But what can u do. Well, tbh, Id prefer eggs and bacon (despite being a vegetarian).

4 Likes

Hello,

I have been considering adding Biotin to the arsenal of supplements I already take, such as CBD, Vitamin D, turmeric and B12. The article posted by bob suggests a dose of 100mgs daily; is that what you both take?

Thank you

Alun

Hi Alun

I think Im on a similar arsenal to you with the termeric etc. But as regards Biotin, Im on about 300mg per day I think. I think the study recommends this, as it says 100mg thrice daily. But I may have got confused.

best wishes

Bob,

I checked the article again and it suggests 100mgs three times a day, so you were on the right lines.

I am following the Swank diet but I do not find it restrictive. There are so many good vegan recipes available now. Your breakfast sounds much like mine, although I use hemp milk mixed with a green smoothie.

Best wishes

Alun

Thanks Alun. I thought I had written thrice not twice! but at least Ive just got to use the new edit button! Im trying Swank too and have hemp oil but havent touched it yet as I kind of have a irrational fear that it could make visual symptoms worse. I already have all kinds of swirling and shimmering.

The green smothie sounds good.

cheers

Rupert

You need to get pharmaceutical grade biotin to avoid taking a ridiculous amount of filler. Needless to say, there is a facebook page with all the necessary information.

2 Likes

Thanks.

Whammel,

Thank you for your advice.

I joined the closed group on Facebook and found the information I needed. I have ordered some powder from an US supplier called PureBulk, and a measuring spoon from Amazon UK. It wasn’t as expensive as I had predicted.

Let the experiment begin as soon as it arrives.

Best wishes

Alun

2 Likes

Well done Alun - lt is best to get the pure pharma grade powder and very easy to weigh on micro-scales that you can get from amazon. l put a small piece of rice-paper onto the scales first - then switch them on and add the 100mg of powder. lt is such a tiny amount that it is best to weigh it.

lt is not an expensive supplement - and most vits and minerals can be bought from Pure Bulk or Bulk Supplements. US.

l am also a member of the fb group Vitamin D Protocol North America. And many on there are also on the Biotin group - and do both successfully. Lots of good advice and help in these groups.

l have noticed that there are many pwms who have had HSCT treatment - and are now hoping Vitd3 protocol will help them - which has made me re-think any ideas of trying for this treatment.

Dr Coimbra - the Brazilian Neurologist who has been treating his auto-immune patients with D3/magnesium/k2/b2/b12 with great success and has trained many doctors worldwide how to follow his protocol.

You can see before and after mri evidence that shows how this treatment works reducing lesions.

Our Gp’s and neuro’s know diddly-squat about vits and minerals - even though are bodies are made from them. And the standard nhs tests for b12/ thyroid etc are useless. Even the testing for Lymes disease - which mimics MS. How many of us have been properly tested. Not in the UK!

Spacejacket,

Thank you for your support. I would be interested to know how long you have been taking Biotin and whether you can quantify any improvements or the slow down in your MS progression.

My neurologist does not seem to value the potential benefits of supplements. When I last saw him I took along a document outlining my condition and included a list of the supplements I took. He looked at it and exclaimed ‘My, you do take a lot of supplements’ and said no more on the subject. He offered no view or any suggestions, and the conversation moved on.

I take the usual supplements for MS plus three doses a day of CBD oil. I use this mainly for neuropathic pain but it has other benefits too. It has certainly helped with bladder urge incontinence and the number of my nightly visits to the toilet has been halved.

I cannot offer any advice over HSCT but it certainly deserves serious consideration. It could be a huge dent to the bank balance but, if you can afford it, why not, unless you qualify for the NHS funded programme?

Best of luck

Alun

all this talk of porridge makes me feel envious…I am craving it madly!

I enjoyed it every day (with a variety of delicious toppings like blueberries or LSA ) until deciding to give the Ketogenic diet a go (my Neuro mentioned it might be worth trying). Apparently porridge is a no-go (Oats too high in carbs) so have to prepare something more complicated and expensive every morning, plus I’m sick of bacon and eggs already!

Has anyone tried the Ketogenic diet with success? I am on the point of returning to porridge , my symptoms are getting worse and I would rather enjoy life with porridge

The mention of medication makes me sick. Red grapes, blueberries, walnuts, green veg, B12, D3, omega 3 oils & exercise is working far better for me.

I get to avoid the NHS, pathologic & neurotic debates. Arguments & constant disagreements solve nothing. They just exacerbate the situation to world war 3 level. Especially when dealing with someone psychotic with a chip on their shoulder.

Look after yourselves folks & grab some free sun. Exercise does you the world of good.

My years of rotting in a room, listening to others advice & taking medications is over.

Driving in my car to a canal beer garden for a healthy lunch is far more appealing on a day like this.

We can’t take the problems away, but we can live with the problems. Just avoid the know it alls.

1 Like

I’ve been on 300 mg of Biotin (bought from USA) for 3 months and it may be a fluke, but my legs have been behaving themselves for a few days! They actually feel attached to my body.

Fingers crossed!!!

I put the 300 mg of powder in a drink of spring water and sip it throughout the day. That way it’s ‘slow release’ as in the trials, although mixing it with water has not been in trial.

As a nice side effect, my hair is looking fabulous!

Pat xx

3 Likes

Where is the best place to buy MD1003 Biotin from ? (price, shipping, quality).

Is it available in the UK ?

Are these any good ?

Scudger,

To avoid taking huge quantities of pills and all the filler that is added, you need to buy Biotin as a concentrated powder. At present, it is not available in the UK, as far as I know.

I obtain mine from the USA from PureBulk. The shipping is cheap.

Take a look at the whole thread where there is plenty of advice and a link to the Facebook page on this issue. You can join the closed group and gain access to essential information on usage and doses.

Good luck,

Alun

Thanks Alun.

Also - please join the fb group of Vitamin D Protocol North America - and High Dose Vitamin D for Autoimmune Diseases. Both groups for all auto-immune diseases and many of the members with MS also were on the Biotin for Primary Progressive MS.

Lots to learn from them all. Even many who have had HSCT are now following Dr Coimbra’s treatment.