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Remyelination

This is from the results of the MedDay trials.

''The working premise in these studies is that biotin serves as a key co-factor for enzymes involved in energy production and synthesis of myelin.[ Biotin is necessary for cell growth, the production of fatty acids, and the metabolism of fats and amino acids.]

For progressive MS, its believed that biotin activates the Krebs cycle in demyelinated axons to increase energy production and that it activates enzymes in the synthesis of long chain fatty acids required for myelin synthesis.

ln other words, it could be a key building block for myelin repair.’’

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I’m sorry, but I find this wording very woolly and non-commital. Using terms like “believe” and “could be” is as good as an admission of “…we don’t actually know, but…” to me.

For example: I believe that Jupiter could be made of pasta but I’m more than happy to be proved wrong !! A personal belief that has no grounding in fact !!

If there was genuine belief that Biotin was actually a potential solution, shouldn’t more committed terms be used and we be informed as soon as possible?

Until then, I think I’ll take this with a pinch of salt (…as soon as I can get some from Jupiter).

Sorry Spacejacket, but after 15 years of being told cr*p, I’ve become very sceptical about anything that has yet to be proven !!

Dom

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MedDay - who did the trials are having their biotin - which is an easy supplement to buy - made into a prescription med by a company in Holland right now. So this is why the ‘ifs and buts’ are in this report. After the work they have done they want to make a fortune out of us. Many of us who have started on it - and the facebook group is now in the 2,000. And this trial was only 23 people- so we are doing our own trial. And with many benefits in only 6 weeks.

So l understand you Dom - and you are not sceptical - l call it realistic.

l am walking much better - have more energy and strength. Getting very tired because l am now managing to do so much more then l have for a long time. Sleeping better from it as well.

There have been lots of reports of all sorts of changes in people symptoms. People who have suffered chronic psoriasis for years are now clear of it. Bladder and bowel improvements. Most of all - is better blood circulation - especially feet and legs. l have warm hands now - whereas l have had freezing hands for years. And this is only after 6 weeks. The trial states 3 - 12 months before results were noticed.

l said l would give it 12 months - but after the difference l have felt l think l will keep on it.

Also, l am taking thiamine - which is another vital B vit.

ln total l have spent £150 on supplements that will last me a year.

I get really pleased when I hear about all the potential new treatments but like Don when I read it through a second or third time my spirits drop with all the “we think”, “it is thought” etc and I decide to wait until I know a bit more. I’m not frightened of experiments and am already playing guinea pig for a new spinal disc which is fantastic, but I’ve become sceptical about some of the trials.

It’s good to hear how you’re seeing improvement though, that’s more reassuring to me than some of the articles I’ve read which are a bit vague.

Cath x

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I’m also waiting to see what happens.

My trip to A&E with a dodgy heartbeat after taking supposedly benign Magnesium supplement has put me off experimenting!

And also I think that anything that has a positive effect can also have a negative effect. The fact that it has a positive effect shows that it causes a reaction… and that can go either way.

But fingers firmly crossed that it turns out to be helpful.

Pat xx

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I ran it past my GP before I started it and he confirmed there are no side effects. He is also going to call his other progressive patients to suggest they try it!

I know that is only his opinion but it does tie in with the information on their site and he told me this before I had given him the various links to read up about the trials etc.

So far I’ve had no improvements but I have only been taking it for a week or so…

Nina x

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I don’t doubt that Biotin is proving to be a useful treatment, but fail to see how remyelination is going to help us progressive types recover lost function, as any axons in damaged areas are likely to be long dead.

At least it might be good news for RRMSers where there are still live nerves to protect.

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I recall not so long ago, reading an article in Sage Journals about research re Biotin, which took place a year or more ago. The upshot was that there were reduced levels of biotin in lumber fluid for MS sufferers than in others. This made me wonder if this is what triggered the Medway investigation. I think it also proves that the advocates of biotin could well be barking up the right tree.

which reminds me to take another dose.

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lt is a ‘safe’ supplement - as has been said. No side-effects. So even if you do not believe in it - why not give it a try and let your body decide what is good for it. There is a long post from Susan Donally - on the facebook page. She has been taking it for 2 months - along with thiamine and other b vits. lt is an interesting and heart warming account of how much she has improved - a little but in lots of ways.

l could make a long list of small but definite benefits and changes l have noticed - but l will wait until l have taken it for another month or so. Be interesting to see what another - say 2yrs will make to how we shall feel.

I’m sure it is safe for most people… but in fact it should not be taken by pregnant women as it can cause miscarriage and it should not be taken by diabetics as it increases glucose in the blood.

It can also cause acne and make acne worse and can cause skin irritation.

Some people have also said in posts on the internet that it has increased their appetite and they have put on weight and some have said they’ve had anxiety and insomnia.

Now of course posts on the internet are not proof or anything and could be other factors causing the problems, but pregnant women, diabetics and people with acne should not take it.

I really am pleased that you and obviously loads of other people have found it helpful… and I’m not saying I won’t try it… but it is not 100% safe for everyone.

I’m not trying to burst your bubble spacejacket, but I’ve been researching it too and there are a few problems for some people.

Let’s not fall out over this… I’m just saying what I’ve read.

Pat xx

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All l have read about Biotin and Diabetes - is that it helps. And is being used to treat diabetics.

Google Biotin and Diabetes.

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You are right spacejacket. I had read a couple of survey results which had said that it raises glucose levels and should not be taken. However, googling ‘diabetes and biotin’ the evidence is overwhelming that biotin esp when used with chromium is very good for diabetes and in fact might even cure Type 2 diabetes.

Sorry… and thanks for putting me right!!!

Pat xx

Pat, l did not mean to ‘put you right’ - l am only glad that you have shown some real interest - and we are all still learning about this.

My husband has type 1 diabetes. And after sneakily giving him vitd3 and B7- [biotin] he has been able to cut out 50% of his insulin.

He was prescribed statins by his GP - which he took for quite a while. l did keep telling him - and showing him the results of research showing how statins can do irreversible damage to muscles. He started having trouble with pain in legs and finding walking difficult. At last his GP - came to his senses and stopped the statins. Now he is a lot better - but l am afraid he is left with some damage. Our GP’s and Consultants are bribed by the pharmaceutical companies to push statins onto their patients.

Has your luxury cat accessories arrived. l like the wood pellets for cat litter. Used by most catteries. [Parents - now big brother - run a boarding kennels and cattery]. Mum uses them for her indoor cat. Smell nice and easy to handle.

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I do take a low statin… 10 mg a day… but started when I was still smoking. I’ve since given up and thinking of coming off the statin as I’ve read so much bad stuff about them.

In Finland they eat a very high fat diet. Mostly meat and dairy products and not much fruit or veg. They do not have high cholesterol and they have not got high heart attack or stroke numbers. They do not take statins. The reason is because all of their farm animals are grass fed and not injected with antibiotics or other crap.

It’s the food we are producing that’s the problem!

All Dickie’s stuff is here and I’m picking him up at 2pm. Of course because I’m excited I feel absolutely terrible!!! SO bloody typical. Can’t get away with anything with MS

I did wonder about the wood pellets. I see they sell them at Tesco so will order a bag with my shopping. Thanks!

Thanks for all your great info on Biotin!

Pat xx

Hello all…this is my first post, so let me wish all of you a belated happy new year. In regard to myelin regeneration, I wonder if you have seen the work in progress by Case Western Reserve University? Here is the link to their lab: http://tesarlab.case.edu/

The BBC picked up the story several years ago; not very current info but I hope we will get an update some day!

Pity they cant bottle ’ placebo ’ .

After reading loads of anecdotes about biotin from people who have used it, it appears a lot of it is placebo.Also there are quite a few people saying that after an initial improvement their walking is actually worse.

Shoot me down if I’m wrong but I think the worst part about MS is the difficulty in walking, anything that could potentially make that worse but at the same time make other things better ( bowel and bladder stuff ) is definately not worth it imho.

I echo the other posts about woolley language , may do , could be, etc is plainly just bullshit !!