Hi, a friend of mine was reading an article on the Medscape website about a new phase 3 study of the investigational drug a highly concentrated pharmaceutical grade Biotin found that people with progressive MS had significant improvement at nine months.It’s worth a read.The amount they were taking was 4mgs when the recommended daily dose is 10 micro grams so it’s a large amount.It’s a pain having to register on the site but it’s worth look.Dave.
l joined them just over two weeks ago - and it is easy to join - and they are a very friendly group from all over the world - all with PP/SP/MS.
l have ordered the pure biotin from Bulk Powders USA. All the biotin you buy from Amazon/ and health supplement companies contain fillers and it is the fillers in a bigger dose that would not be advisable. l have ordered 100grams - which will probably last me a year at least. l also bought a micro scale and callibration weights as the dose is very small. Not something to measure with a spoon.
l have taken the Biotin l bought from amazon for a month. And apart from wonderful nails/hair/skin l have felt better. Things are improving - but l will wait and see before saying too much - as l still keep thinking - ls it all in the mind. So l have not told my family or friends - want to wait and see if they notice me getting about easier. One good friend who l had not seen for a couple of weeks did say -Wow -your skin looks all plumped up and glossy - so l did tell him and gave him a pot of Biotin to see if it helps his hair.
l can’t see why this supplement -its called B7 - should not be used for all MS. lt is not toxic and you cannot overdose as you just pee out what you do not absorb - like B12. Results of the trials on the facebook group Biotin for Progressive MS.
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Why is it called vitamin B7 and vitamin H?
Biotin is a water soluble vitamin known as B7 - the Germans call it Vitamin H - the h for Haar and Haut -which is german for Hair and Skin.
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I’m RRMS and have started taking 1mg of d-biotin a day. I know that is low dose. It’s an over the counter dose for those taking it for hair and nails.
I found an interesting academic article from 1999 that suggests MSers may be biotin deficient compared to controls (from testing spinal fluid). I put a question about the article on the Barts Blog on Tuesday.
Here’s the article and link.
Cerebrospinal fluid levels of biotin in various neurological disorders.
Acta Neurol Scand. 1999 Jun;99(6):387-92.
Conclusion:
There is a significant reduction in cerebrospinal fluid biotin in epileptics and patients with multiple sclerosis compared to controls. In epileptics this may be related to competition between biotin and anticonvulsants bearing carbamide ring for absorption. Reduction of biotin levels in patients with multiple sclerosis could be attributed to intestinal malabsorption caused by the underlying disease or a biotin-binding immunoglobulin which may be involved in multiple sclerosis pathogenesis.
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Lenney
l am reading all l can - and yes it is interesting. Makes you wonder why it has not been mentioned before. Of course it is a food supplement - not a prescribed med - so no big pharma making a fortune from the NHS and us.
Between you and l - Now l have noticed to-day an unwanted side-effect. l have hoovered the whole of the downstairs and washed the floors with the steam-mop - then l went out with the dogs - me on my Tramper - so that the floor could dry.
Biotin is making me a SKIVVY!!!
A few weeks ago - l could never have done that - and certainly not standing up on useless legs. And l am still standing.
Even have washing out on the line.
That is quite a severe side effect Spacejacket…
Egg whites can stop biotin working apparently, mostly raw egg whites but cooked to some degree too. If raw egg whites are eaten too often over a period of weeks can cause a biotin deficiency. Not that I eat raw eggs.
So last week I separated the eggs and had two fried egg yokes and they contain some biotin. My mother thinks I’m cutting out too many food types as i’ve noticed the gluten free bread I buy contains egg white powder, have stopped buying that. I will think about getting a bread maker and make my own gluten free bread.
I know there’s all that intellectual stuff, but is it safe?
From reading a bit more on biotin it seems long term use of anitibiotics may require an increase in dietary biotin. Also taking high dose vitamin B5 (panothenic acid) with biotin could cause problems. Large doses of pantothenic acid (vitamin B5) have the potential to compete with biotin for intestinal and cellular uptake due to their similar structures.
Have a look at this Lenney,
Biotin-Thiamine-Responsive Basal Ganglia Disease-Gene Reviews
www.ncbi,nlm.nih.gov/books/NBK169615/
also. Cerebrospinal fluid levels of biotin in various neurological disorders - PubMed
Cerebrospinal fluid levels of biotin in various neurological disorders.
Thanks Spacejacket. I noticed basal ganglia disease was list on the references on this document at the bottom. It also discusses cases of MS patients and treatment with high dose biotin.
Thanks Lenney - you have been very helpful. l have forwarded that link to the Biotin for Progressive MS group.
l ordered the pure Biotin powder from Bulk Supplements US - and also B1- Thiamine from Amazon. They both arrived today- l have enough Biotin to last for 333 days - and it has cost me £120. l also bought micro scales and callibration weights to get exact dose as it is minute. For the last 4 weeks l have been taking the Biotin [with fillers] from Amazon. To get the right dose it meant taking 30 tabs a day - the only trouble being the fillers contain calcium/magnesium in too high a dose.But even taking this type of Biotin - l have found l have more energy and have felt stronger on my legs. Also, my dropped foot has been dragging on the floor all the time. As for hair/skin/nails - well - what an improvement.
Another exciting discovery l have found - from people on the Biotin for Progressive MS facebook group - is that Borax/Boron is supposed to be the answer for arthritis. lt is a natural product - anti-fungal/anti-septic/anti-inflammatory - is brilliant for candida.
Now l always knew that it was a safe natural product and used for cleaning - and l do put it occasionally in the washing machine/dishwasher and clean the oven and fridge with it. lts so kind to your skin - not like most cleaning products. But to actually take - its only a small amount - but nether the less - internally - l was surprised. Osteo-arthritis is the main reason for my mobility now -lt has become more of a pain/problem then my MS.
lf you are interested then look at this link = www.cheflynda.com/.../the-inexpensive-arthritis
What with the Athletes foot cream - we could be ‘curing’ ourselves with products in our cupboards!!!
l should have proofed read that post - l meant to say - and it is an important fact - that my dropped foot is NOT dragging nearly as much as it did. l am finding improvements already.
l expect quite a lot of you are now SPMS - so this treatment would be helpful to you. Still do not know why it is not advised for all. The Big Pharma - are not pleased and are trying to talk it down - as the last thing they want is a cheap medicine. They are already trying to muddy the waters. The next thing is they will try to patent the supplement.
Apart from Biotin being so good for skin/bone/hair/nails - it is also good for your eyes. And on the facebook group - a lady in US asked her opthalmic optician about it and was given a ‘script’ for it.
Spacejacket how much thiamine are you going to take? I was thinking 100mg a day with the biotin to begin with.
l asked the same question this morning on the facebook group - as they do have people on there who do know what they are talking about. They say 500mg daily. My B1 is 100mg - so l shall take 5.
FWIW - I just picked this up from the TiMS forum:
Skip Lenz (Skips Pharmacy in Florida) a compounding pharmacy used by many MSers in the US for their LDN, has just posted that he has sourced a supplier for the same Biotin used in the trial.
Might be worth dropping him an e-mail.
Geoff (who has no personal interest in this, but might try it)
Geoff - The pharmacies will be charging mega bucks for this - after a lot of looking - l sourced mine from Bulk Powders US and l got 100grams - enough for 333days- of pure Biotin- for £120 - l have bought the micro-scales and callibration weights from amazon to make sure l weigh it out exactly. You also need to take other B vits with it. Thiamine being one. My powder arrived a couple of days ago - took about a week. l am still using the -over-the counter Biotin l bought.
l am much stronger and have more energy. Just cleared out the ‘lean-to’ and vacuumed and moved heavy tables and exercise machines etc. This is the only draw-back to taking Biotin - lt turns you into a ‘skivvy’. Dropped foot - not always dropped. l am now exhausted - but l have been really labouring for a couple of hours. And this is only after taking the Biotin for 4weeks. And l was taking t he Biotin with fillers - not the pure powder.
Hair/nails are growing so fast and look so much better. Skin has also improved - so it makes you wonder what else is going on.
lf it is only small improvements - l will settle for that.