Follow-ups

Here is the latest on recent experiments I’ve tried:
 
 
At my next appointment, my doctor explained to me that dosage as high as was required for this protocol was not (yet?) available in this country, but taking fistfuls of the lower dose capsules as I was, was doing more harm than good.  With it, I was also ingesting more fillers and coatings daily than was safe.  
 
He said if I could find a compounding pharmacy I trusted (referring to a recent incident in SF that had exposed one being run solo by an older pharmacist who had made a life-threatening mix-up), he would certainly write a prescription for me to take there, but he also said that there was still no definitive proof that dosages that high made any difference in the disease.
 
I decided that improvements I thought ! had to my bladder could just as easily have been psychosomatic and in deference to my mobility, I decided to abandon this test for now.
 
 
I’m always hopeful about dietary changes, but I’m also easily discouraged when I can’t see immediate changes. When you think about that for a minute, you recognize how incongruous this is. This has proven to a silent, behind-the-scenes, slow-building disease (in my case, anyway); why should I expect dietary “tweaks” to make a quick, discernible difference?
 
On the one hand I say “No one cares about you as much as you do” suggesting that you can’t whole-heartedly trust medical advice, that you may be the exception to any rule, so if it doesn’t threaten your life, try whatever makes sense to you.
 
But on the other, whenever I’m giving up on diet, I go back to the standard belief that  “no specific diet has shown any long-term benefit.”
 
So ultimately, I rely on how it makes me feel.  In this case, the idea sounds good, but it has proven to be difficult to put into practice at this time. Making kale smoothies in my “mini-kitchen” is hard. I know I could set up a process to make it easier, but I guess part of me doesn’t feel it’d be possible to sustain.
 
 I decided to have a kale smoothie whenever I can, but not to go out of my way to insist on it daily for now.
 
 
This is still the situation for me.  That the jury is still out.
 
I read a disappointing article here. It reports that some researchers believe that “the drug is nothing more than an ‘expensive, overdosed version of Rituxan’…” That it was approved solely because the original was going off-patent, so the manufacturers raised the dosage level and ‘surprise!’: new test data.
 
I guess I don’t want to believe that is true, that it is a crass money grab at the expense of patients. But I also recognize that big pharma has every incentive to make money and little incentive to find a cause, much less a cure.
 
The silver lining that I stumbled across in reading this article is mention of the GRIT Freedom chair!  More to come on that!
 
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The biotin protocol

I first read about it in an article in 2015 that reported on initial study results presented at the 67th Annual Association of Neurologists conference.  The Biotin Protocol.  Ooh, fancy!
 
Biotin is a form of vitamin B, and it plays an important role in energy production within cells. Researchers believe the compound has no anti-inflammatory action, and thus no effect on relapses, but that it treats disability by tackling neuronal loss
 
I thought at the time it was something interesting to watch and wanting to hedge my bets, I added a dose of the highest over-the-counter Biotin (which I thought was a big dose–10,000 mcg!) to my regular daily meds.
 
High-Dose Biotin
 
Eventually I started to see more articles reporting that researchers were testing high doses of industrial grade biotin in the UK and France.  See here and here.
 
I looked up the actual “protocol” being studied: The protocol, created by the company MedDay Pharmaceuticals in France, tests high-doses of the vitamin Biotin (aka, vitamin B7). It is recommended that a patient take 300 MG of pure Biotin per day.  The trial is attempting to show that high-dose biotin can reverse disability in non-active progressive MS.
 
I finally did the math and realized my over-the-counter efforts were way too low! So I bought more bottles and worked out a schedule where I took 10 pills three times a day just to see.
 
Will Get Rx
 
Reports said trials were set at 1 year which I know from personal experience might not be long enough.
 
I decided that if I was going to stay on this for say three or more years, I should talk to my neurologist and get a prescription.
 
In the meantime, I can report that even with my over-the-counter supply, two months in I seem to have better bladder control.
 
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