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Old 01-24-2016, 02:08 PM #11
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Quote:
Originally Posted by mrsD View Post
There is a study on PubMed where 10mg a day of biotin helped a patient with burning mouth syndrome.

I've been using 7,500mcg (7.5mg) off and on in bursts of 3 months or so on, then off...for 2 years now. I find it very helpful for my nerve pain. It is very good for strengthening the skin and hair too. I get mine at Puritan's Pride.

Biotin uses the same transporter as alpha lipoic acid. So if you take that supplement also, space them about 12 hrs apart.

I can't really comment on these mega doses however in the 100's of mg area. I haven't see papers on that yet.

But here is the updated monograph from Linus Pauling Institute:
http://lpi.oregonstate.edu/mic/vitamins/biotin

It has a comment on the MS use so scroll down to "disease treatment" section.
There are some really helpful schematic diagrams for
the biochemical importance and uses of biotin on this monograph.
Thanks, MrsD. I was really hoping you'd comment on this.

I would never take 60 capsules a day......not without a doctor's approval or at least their knowledge of what I was doing.

But it's a somewhat of an easy fix if it works well and doesn't harm other organs in the process. I guess we just watch and wait.

Thanks for always giving such useful advice.
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Old 01-24-2016, 04:05 PM #12
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With my day job hat firmly on, the link to the Linus Pauling Institute that mrsD has provided looks like a very reliable source of information to me.
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Old 01-24-2016, 04:15 PM #13
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Yes, thank you Kiwi.... That site was just remodeled too.
It is so much nicer now, IMO.

It is a great place to find up to date information on various nutrients.
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Old 01-25-2016, 01:55 AM #14
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I also wouldn't recommend popping 60 capsules, nor is the study that they're currently working on suggesting that (in fact it warns not to do just that... it's not the same grade or quality of biotin and yes that makes a huge difference) but at least one of the good things about biotin is it a water soluble vitamin, making it difficult *not impossible* to get too much of, providing of course you are well hydrated.

However, that is when talking about the normal doses, and not some ultra dose, the equivalency of taking an entire bottle of biotin. There's no real information as yet about how it may concern the various organs when subjected to large doses over an extended period of time. However I would imagine that biotin's effect on body fat would lead to some involvement with the liver, and possibly the kidneys as well.

That said, water soluble vitamins and nutrients are far safer than their fat or organ storing cousins, and are the least likely to lead to any sort of toxicity, barring an underlying condition that may trick them into being stored or prevent them from being adequately flushed through the system.

Only one other concern over the liver and kidneys with excess biotin consumption, is that it is one of the few vitamins which can easily slip through the blood/brain barrier. Leading to the question of whether or not it might end up causing additional neurological problems while fixing the MS. Could it be an out of the pan and into the fire situation, if the long-term dosing of biotin causes some kind of build-up/plaque within the brain tissue or along the nervous system pathways.

That is something we still don't know for sure, which is why it remains in the phase III of testing. The mice and rats have been shown great results, the beginning human trials are showing remarkable results, but we still don't know how much benefit will be gained exactly, nor how long one can subject themselves to it without falling down another slippery path, if ever.
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Old 01-25-2016, 12:02 PM #15
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Hey all, maybe I missed this in your posts, but Medday's Phase 3 results were announced last year. This is a French company, and this medication is not FDA approved yet. While the results were far less impressive (about 12% of subjects saw disability improvement) vs 90-something% in the Phase 2 it's still a lot better than the 0% that people with PPMS have now for anything. And be aware that what they were measuring was improvement. There could be a neuroprotective component that hasn't been measured yet. I would post a link, but for some strange reason, I'm coming up with a dearth of useful Google hits for this topic at the moment. Mostly just getting the old news about the Stage 2 stuff.

And yes Sally, this is specifically for PPMS, not RRMS.

I have been taking 200mg (not mcg) as was used in the trial for about three months now. An MS specialist prescribed it for me, and I get it filled from a compounding pharmacy. Since it's not FDA-approved yet, my insurance won't pay for any of it. It's running me about $90 for 100 pills, which is about a month and half supply.

Wish I could report amazing results, but so far, I'm not noticing much of anything, including any side effects. Of course, it's only been only half the time of the trial, so who knows?

I'll be happy to report back again if I have any news. And feel free to ask questions if you have any.
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Old 01-25-2016, 01:02 PM #16
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Default More info and important warning

Here is a link to an announcement of the Phase 3 trial: http://www.bioworld.com/content/medd...hase-iii-trial

And just to amplify what Starznight said about not taking large amounts of the OTC version, please, please listen! The OTC products contain a lot of filler because even 10,000 mcg is a very tiny amount, so they have to have to add a substance to make up a volume large enough to form a pill. Often, that filler substance is something like calcium, which at the doses they recommend is harmless, but is REALLY dangerous if you take a massive number of them. It could even mess up your heartbeat. Please don't try this!
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Old 01-27-2016, 11:16 AM #17
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There's a lot of reference to 60 pills a day. I used that reference to put the dose into context, plain and simple. I did not premise it with a warning because Starznight did a great job in her initial post. Not for nothing, her second was good too as were all that followed.

Last edited by February; 01-27-2016 at 03:55 PM.
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Old 01-27-2016, 12:16 PM #18
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Quote:
Originally Posted by kiwi33 View Post
With my day job hat firmly on, the link to the Linus Pauling Institute that mrsD has provided looks like a very reliable source of information to me.
I am happy for you. I mean this with respect and without sarcasm. My cousin had a day job that he was very good at too. He had to trade it in for a new one. It's immune too but the flip side. He currently is managing to live a quality life, with all the challenges and limitations that comes with it. I don't know if it's post traumatic strength, self realization or what but he has more joy, peace and happiness than most people I know. He's perfectly capable of deciphering reliable sources that included a neurologist and a 50 year old, well respected pharmacy. You asked me a question and I answered it open handedly. I am not pushing biotin or b synergy. My intension was to share what was really good news to our family and bring awareness to others so they can decide for themselves. We are treading new territory and for at least for us, that's a good thing.

Last edited by February; 01-27-2016 at 03:56 PM.
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Old 01-27-2016, 12:25 PM #19
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Joan, your post was very helpful. There is quite a gap in the results from the original studies but if it can stop the progression in 67%, that alone is huge! Please keep posting results. I'm wishing you the best.


Quote:
Originally Posted by JoanB View Post
Hey all, maybe I missed this in your posts, but Medday's Phase 3 results were announced last year. This is a French company, and this medication is not FDA approved yet. While the results were far less impressive (about 12% of subjects saw disability improvement) vs 90-something% in the Phase 2 it's still a lot better than the 0% that people with PPMS have now for anything. And be aware that what they were measuring was improvement. There could be a neuroprotective component that hasn't been measured yet. I would post a link, but for some strange reason, I'm coming up with a dearth of useful Google hits for this topic at the moment. Mostly just getting the old news about the Stage 2 stuff.

And yes Sally, this is specifically for PPMS, not RRMS.

I have been taking 200mg (not mcg) as was used in the trial for about three months now. An MS specialist prescribed it for me, and I get it filled from a compounding pharmacy. Since it's not FDA-approved yet, my insurance won't pay for any of it. It's running me about $90 for 100 pills, which is about a month and half supply.

Wish I could report amazing results, but so far, I'm not noticing much of anything, including any side effects. Of course, it's only been only half the time of the trial, so who knows?

I'll be happy to report back again if I have any news. And feel free to ask questions if you have any.
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Old 01-27-2016, 10:29 PM #20
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Hi February

"My intension was to share what was really good news to our family and bring awareness to others so they can decide for themselves."

I think that you are doing a great job of that in this thread.

The only reason that I endorsed the link that mrsD provided was to encourage members to check it out and then, in your words, "decide for themselves".
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