I knew of no available treatment options for my Primary Progressive MS, so when I heard about the pure High Dose Biotin Protocol I jumped on board!
The protocol, created by MedDay in France, revolves around the vitamin Biotin (aka, vitamin B7 or H). It is recommended that the patient take 300 MG of pure Biotin per day. The clinical trial, called MS-SPI, involved 154 people with Primary Progressive MS or Secondary Progressive MS . The patients either received the Biotin pill or a placebo over 48 weeks.
The results showed that 12.6% of those given the high-dose Biotin showed improvement in disability on either the EDSS (Expanded Disability Status Scale) score or a timed walk. None of those on the placebo had improvement. There were no serious side effects noted (high-dose Biotin was also tested in relapsing and progressive MS patients with fixed visual loss in the MS-ON study). An article on both trials is available through this link.
For me, this was great news!
I discussed the Biotin protocol with my primary doctor and my neurologist, and they did not have any objections, so I started the protocol on March 9, 2016, and I have been following it for the last 5½ months.
For the first couple of months, I suffered from headaches. I usually don’t have headaches, so I knew that it was most likely from the Biotin. I have since learned that with Biotin you need to drink lots of water. Since I started doing that, the headaches have decreased greatly.
Also, I noticed the cramps and spasticity were increasing in my legs. It was extremely painful!
Now, I feel that my leg cramps and spasms are slowly improving.
I was also starting to have pain in my spine before the protocol, and now the pain is completely gone. I am able to walk a little better and have a little more energy. Not a lot more, but I will take anything I can get!
The only downside I attribute to the high-dose Biotin is that I occasionally have terrible heartburn that I didn’t have before. Hopefully, that will disappear over time.
Is Biotin the help I am looking for? I’m not sure, but at this moment it is the only option I have and it seems to be helping! I am encouraged, and on the horizon there is even more promise for PPMS.
In 2017, the drug ocrelizumab (Ocrevus, Roche) may very well make its appearance. With it comes the claims of possibly halting the progression of PPMS.
Also, HCST (hematopoietic stem cell transplants) are very exciting, with the clinical trial results stating that it could be the first MS therapy to reverse disability! There are risks with each treatment, but do the benefits outweigh the risks?
Definitely more research for me to do, but I am very optimistic of what the future holds in the world of MS research and treatment!
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