In this episode, Michelle buys a small packet of white powder and some tiny scales…
In my December appointment with my neurologist there wasn’t much good news. The one thing he suggested I might want to look into, though, was a clinical trial using pharmaceutical grade Biotin, 300mg a day. HERE is the data from the clinical trial – it showed some promise for people with progressive forms of MS. The news of the trial created a lot of excitement when it first came out, and we are all waiting to see where it goes next – but in the meanwhile, prepared to act on our own.
Biotin is Vitamin B7. It’s sold OTC (Over The Counter) and many people take it as a supplement for stronger hair and nails, among other things. However, the OTC stuff is sold in mcg – micrograms – and you’d have to take 30 or more of these tablets a day to get to 300 milligrams! And that brings with it a whole load of filler, the stuff that’s used to fill out tablets – junk, basically.
I started to search for Pure Biotin, and a fellow person with MS directed me towards a Facebook group of like-minded people. These people were way ahead of me and had found a couple of sources of pure Biotin powder.
I jumped in! I ordered a little packet of white powder, a set of scales and some empty capsules from Oregon. Sure. No problem… I expected it to be delivered by the RCMP, so I was a little disappointed when it just showed up in the mailbox.
Next – how to get this little bit of powder weighed out and into these capsules. Some people just weigh it out, sprinkle it on their food or just swallow it. With my ham fisted MS hands, that’s not going to be the best option, three times a day. We experimented. We got grumpy. I realised what the people on the Facebook meant when they were saying that the last shipment they had received seems to be ‘clumpy’, because it stuck to everything.
In the end we had our system. We clipped the nib off the spout of a squeezee bottle to use as a funnel. Ian used the tip of of knife to try to get the Biotin on to the scales. I put the capsules in the capsule machine and tried to fill them with the funnel. And we had a lot of white stuff all over the place. I’m sure people who handle drugs for more nefarious reasons don’t spill their ‘product’ all over the place like this.
We made 24 capsules! Woo hoo… I’m ready to start tomorrow! Don’t hold your breath waiting to hear how effective the Biotin has been, though. It seems the earliest people notice a difference is two months and for some people it’s been up to 8 months, if they notice at all. That’s 3 capsules a day – over 700 capsules just to see if it works! Biotin, oh boy…