l know quite a few of you are on the face-book group Biotin for Progressive MS - but for those who are not- l just wanted to keep those who are interested informed.
Many of us have already started benefiting from taking Biotin - and Thiamine. More energy and for many better blood circulation. Less of the cold purple feet and legs. So it is doing something in just a few weeks.
l take mine divided into 3 times a day. But l have heard that you can put the days supply into a bottle of water and just keep drinking it during the day. This way you are keeping the effect going longer. So l might give this a go. Be a good idea when you are out for the day.
Jo, There are several people on the facebook group - who are also taking Fampyra with their Biotin. They are mainly in US.
Are you taking Fampyra - only l read on here that quite a few had not had good results - in fact - after improving they then went the other way and their mobility was worse then before they started on it. l was keen to try it - but this put me off. l cannot risk getting any worse as l can only just manage to get about indoors with my rollator. l have improved since starting the Biotin - so l do not want to take the chance now.
l went to a big party last night - and l did dance - holding onto my rollator - for about 3hrs!!! And at 3am l was driving friends home. l am shattered this morning - might even go back to bed as l did not sleep anyway.
We used to all dance around our handbags - now l find - we dance around my rollator - and l am not the only one holding onto it!
The handbags all get put in the carrier part - and shawls and cardies.
I’m on a clinical trial for Fampyra at the moment - I suspect I’m actually getting the placebo, but I could just be a non-responder, as it’s not doing anything for me - the trial ends in a few weeks anyway, so I’ll probably just wait till then to try biotin.
I’ve read both good and bad things about Fampyra on this forum, I find it very difficult to know what to do for the best - I don’t want to lose any more mobility, but by doing nothing, I feel like the progression’s going to get me anyway, and at least this way, I tried to do something.
But if I’d known about the biotin, I’m not sure I’d have made the same decision at the time.
These days, btw, I thought there only was one 3 o’clock a day, I’m very impressed with your partying!
l feel the same as you - got to do something - but can’t afford to make myself any worse. Have been struggling to get about - need to hold onto the rollator indoors and out.
But at the party on Saturday - l was at times dancing ‘hands free’ - especially to the rock number ‘‘Put your hands up - put your hands up’’ - at 67 l am still a ‘rock chick’ .
Certainly walking better - catch myself leaving the rollator behind. The left dragging leg at times seems to be working well. Knee lifting - foot going forward and not out to the side.
So l am still thrilled with the small - but significant results. And in such a short time. As the trials did state that improvements were not noticed until after a few months to a year on Biotin B7.
l can’t help you with that - l just bought the Smart Weigh scales from amazon and weigh it. lt is very light - and you only need such a small amount that l feel it is best not to try to ‘guesstimate’ it. Although, l have heard of people taking a much higher dose then l do. 0.1mg x 3 times a day.
Just been reading your messages, and many more on the subject of Biotin.
Trial results look promising, but we’ll have to see.
Where did you buy it, and what strength ?
If you Google it, everyman and his dog seems to have a flavour, from Amazon to Holland & Barratt.
There is a fair amount of chat about the drug MD1003.
They say that dosage is 300 mg/day, corresponding to 10,000 times the recommended daily intake.
It’s the myelin repair that I guess we are all interested in ?
lt would be best for you to join the facebook group - Biotin for Progressive MS. Nearly 2,000 members in just about 6 weeks.
On there - just click on the ‘files’ and all the info about getting the biotin and measuring it. And data from medDay.
But in case you do not want to join here is the best way to start.
Do not bother with the over the counter type of pills. You would need to take 30 of the 10,000mcg ones - and that is too much of the filler they use. Calcium and magnesium.
So order your pure powder biotin, and thiamine ,if you are going to use it , from Bulk Supplements US or Pure Bulk US or Trafex - Only takes about 5days to come. My powder from Bulk US was £120 with shipping. That is for nearly a years worth. The thiamine is even cheaper.
lf you get the 100g - this will last you 333days. You will also need a micro scale - like a jewellers scale. l got mine from amazon a Smart Weigh. And l use edible rice paper. Tear off a small piece and place on the scale - switch scale on to mg and weigh 0.1 mg of powder onto the paper and just pop it into your mouth - it dissolves straight away. Wash it down with a drink. Do this 3 times a day.
The trial did also use other B Vits. Thiamine is B1 - and is good for energy. l take 5mg in the morning. A lot of people are taking 3 times that amount. l will start taking more. l also take a B complex plus B12 methylcobalamin 5000mcg. You cannot take too much as they are water soluble - you just pee out what is not absorbed.
l keep my ‘stash’ in the fridge. l use the empty ldn pots to fill with the powder - this prevents me from keep opening the pack and perhaps losing some of my precious powder.
On the facebook group - you will learn so much. Several of us - had such good results to begin with - then went through a ‘patch’ of not feeling so well. We have now learnt that this is to be expected - and not give up. lts the body’s way of registering the change - and it means that the supplement is working. The info for that is on the group pages. There are some really clever folk there - from all over the world. And the trial we are doing is much bigger than the MedDay one.
I’ll join up on Facebook and have a read.
What benefits have you seen so far ?
I guess I’m luckier than most, in that I was diagnosed 18 months ago, but am reckoned to have had MS for 30 years, so you can imagine the slow rate of decline.
I thought my limp and balance issues were more to do with motorbike accidents, for a few years.
I cycle regularly, this weekend will be ± 90 miles hopefully, but walking, 3 miles like a drunken sailor dragging one leg,
if I’m lucky.
You may have seen my posts on Bee Venom, so always on the look out.
This Biotin look very promising
A lot of people - me included- had benefits after just 2 days on it. So it is very exciting. l have had PPMS for 33 yrs - so you can guess how thrilled l am to find something, at last, that is helping without being toxic/dangerous/ dreadful side effects.
It is fantastic news for all concerned
I listened to the webcast highlighted on Facebook. Very promising.
Unfortunately it came too late for my Dad, who passed away about 3 yrs ago.
So I know a lot about the long term affects first hand, which is why I am so upbeat about everything.
He had suffered with PPMS for over 15 years.
Whats the chances of his son having it too ?.
My Mum was obviously devastated, so any news is great news.
