MediTest
17 Jan 2019
Author
supaguy
Title

Fampridine versus biotin

Body

Has anyone with MS tried Fampyra (fampridine). From what I have seen, it looks like exactly the thing that I need. I saw a neurologist today and she explained that they can't prescribe it because it's not cost-effective in NICE guidelines. It does indeed seem to cost a lot of money ... but nothing like the sort of money that they are spending giving people  Tysabri. it is basically just a potassium channel blocker that speeds up impulses down the axons.

 

This drug is another one of those (like to Tysabri) that is made by Biogen.

 

Comments

Glenn, I found out that it can be prescribed in Australia for a very reasonable monthly charge, but nowhere else that I have seen.  This is a shame because if these videos are correct, it could be very useful if you are one of the people it works for.  I did see on the MS Trust site though, that it only works for 35%b of people who try it.

https://youtu.be/PTdgJ2m37L0

https://youtu.be/xZwPlTdEKFE

The patent has now expired and Dalfampridine is prescribed (much?) more cheaply in the US, so things might yet change here as well.

One question: are you still taking biotin?  I am, and have recently started taking taurine as well.  Apart from the fact that biotin can take a long time to really show its benefits, with me, using both, my ability to walk up and down stairs and just generally move around without aid is getting much better, and with non of the side effects of taking fampridine, such as bladder infections, dizziness, headache, back pain, difficulty sleeping, feeling sick and stomach upsets. 

 

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah!

😊

Thank you for posting my comments for me. Thank you too for the information that you impart.

 

I know that Australia is much more strict than the UK when it comes to dispensing medicines. I note that one Australian website requires an Australian prescription before it well dispense fampridine.

 

A couple of weeks ago, a Northern Irish couple won that big EuroMillions jackpot. I could feel an immediate and close bond between us. I felt a closeness to the bint. Perhaps it was true love?❤️💕💓  Dr Paul Thibault practices in Australia. I wonder whether we could be related. Perhaps I should send him a friend request?🙄

I actually stopped taking biotin back in late summer after I had an ingrown toenail which became infected. I found myself in a position of almost trying tell doctors what test I wanted and what antibiotics I preferred. Anyway, that was back then and I haven't taken biotin. There are lots of other vitamins that have been put away that I need to really start taking again too. I have some taurine here but I just have never taken it.

🤔

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Sarah

Should fampridine be taken along with Doxy, Roxy and Met? Also what is this taurine? those u tubes of two patients with improved walking are encouraging but where is the information on dosage and length of time the med needs to be taken?

It is all so confusing. I suppose one has to be p[atient. I am so very keen for Sonal's walking to improve.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Neena, fampridine is a very expensive MS drug, which has been shown to slightly improve walking speeds, but I guess no more than CAP abx and biotin improved mine. That is all I know, but I guess that it is expensive even in India. If you live in Australia and have MS, your neuro might prescribe it for you, but that is not really good news!

Neena, I had regained a lot after about a year but even now, years after takig abx I am still improving bit by bit with some high dose biotin.

Taurine is something that Stratton suggested.  It is an amino acid but looking it up, it seems most useful for people with heart disease or diabetes, so since I have neither, I might hint that I should stop it.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Glenn, if you really want to try it, keep a look out for any trials over here, but do remember that it has only improved people's walking in 30% of cases.

Get out your biotin and start some taurine, one capsule a day along with the biotin, then see if you start seeing improvements by the summer, since you should still be stocked up with biotin, or have your nails already stopped growing?

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah

thanks for your reply. What is taurine? well if it is better for those with heart issues or diabetes, then it is not for Sonal who does not have these issues. Sorry to be so ignorant.

Sonal is taking biotin and many other supplements along with the daily Doxy and Roxy. So far not much of a reaction.

Will post a comment if anything unusual. It was so good to learn that Elizabeth feels her walking has improved. Bravo!

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Neena, this morning I looked up 'Taurine and Multiple Sclerosis.' Now I am no longer thinking of stopping it, so I suggest you look it up also.

I will shortly add a piece to the Research section.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hey Sarah--

I've been taking Taurine for about a year now.  I think it may be a very useful supplement for anyone with an autoimmune condition.

Please have a look at the following abstract (I don't have access to the full article):  https://www.ncbi.nlm.nih.gov/pubmed/20430256

I know it isn't about MS and Taurine, but it is about Scleroderma and Taurine.   

Anyway, I take about 5 grams a day in water.  I use the powder, not capsules---just cheaper and more efficient that way.  I buy it from Bulk Supplements (available on their own website or Amazon).  You can buy a variety of size bags or their capsules.

 

Cheers,

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year:
Ankylosing Spondylitis and Scleroderma
Serendipitous discovery that Doxycycline relieved pain/stiffness/soreness during a trip to Africa
Have started Doxy + Roxi; waiting full 3 months to pulse Tini.
Have most of supportive supplements in place for many years including NAC.

Thanks Sarah and Jan

I will certainly look it up but not being a doctor, some of this stuff does not make much sense to me. What does David Wheldon thjink about this? And if Sonal were to start it, how much, what strength capsule should she take?

 

By the way did you know University of Caligary also conducted some MS trials with antibiotics. Chanced upon that today.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Neena, David gives both me and himself 3 grams of taurine a day, but you can take up to 5 grams. He was put onto it by Charles Stratton of Vanderbilt University, who now swears by it.  He buys it loose, as a powder and mixes it into something like orange juice.  

It can be bought as capsules, of 1 gram each, but since it dissolves quite easily I don't object to taking it loose.

Calgary is probably Dr Luane Metz, who uses minocycline as a monotherapy.  I have heard from a couple of people taking it, but you aren't immune from having the occasional relapse.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks for the taurine update. I see that the powder is available on Amazon India so I will order for Sonal or ask her to get it and start as soon as she gets it. But if it is powder how does one measure? What is it useful for? what does it do? Sorry for asking basic questions that may sound silly.

So far she has had no trouble with either Doxy or the Roxi.

Neena

 

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Neena, you can buy little weighting sales from Amazon as well, but one gram of taurine is roughly one level teaspoon: well, an English teaspoons anyway: American ones are much bigger!

If you want to find out more about taurine type 'taurine and multiple sclerosis' into Google, but this is a good one!https://medicalxpress.com/news/2017-12-taurine-cells-multiple-sclerosis.html

Sonal wrote to me to say she was having no trouble with roxithromycin, which is good news!

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah

going to see Sonal today and will discuss taurine with her. Also dose of biotin. will go with the teaspoon measure rather than weigh 3 grams! For that one would need a goldsmith's scale! or i will see if capsules are avaiable, hopefully not too expensive.

Thanks for all the help with your comments and advice. Best

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Neena, biotin tablets are available from Amazon, which is what I use: they are only very small and I can take twenty or thirty a day, in two goes, with no trouble!

As for taurine, David gives us both half a level teaspoon a day, which he reckons is two or three grams: a good job I checked on that!  Taurine does dissolve very easily and has no taste.

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.