Just thought I'd post on my status having started taking biotin supplements, and then about three weeks ago, switching to a more expensive type recommended by the Biotinidase Deficiency expert for his patients with full-blown deficiency.

It was by no means a cure, but my symptoms have improved. My bad days are no longer hateful, and possibly are even on par with what my good days used to be. The wholly weird "rushes" I was having steadily have also waned.

I'm trying not to get too excited about the improvement because I always wax and wane, but this seems like a prolonged wane.

The other interesting thing is that I've lost about 17 pounds without trying hard at all. Right about the time my neuropathy hit, I started gaining weight like crazy. I was attributing it to entering menopause as I've heard horror stories, but at this point, I'm second-guessing the cause. Biotin is very involved in metabolic processes.

The other thing I've learned in my reading is that the gut is very involved "biotin uptake." I keep going back to the fact that all my problems started when I horrifically insulted my gut with iron supplements I was taking due to very low ferratin levels. I haven't been right since, and my neuropathy hit about three months after that. Maybe a coincidence, but I'm beginning to wonder. Here's a good article on biotin uptake in the gut.

Cell and Molecular Aspects of Human Intestinal Biotin Absorption

I can't help but notice this line in the write-up:

"An important characteristic of the human intestinal biotin uptake process is that it is also utilized by 2 other structurally and functionally unrelated nutrients, namely pantothenic acid and lipoate."

Pantothenic acid is Vitamin B5, and unless I'm misreading things, lipoate is lipoic acid. I've been taking R-Lipoic Acid since 2014 and have always been quite convinced it improved the initial horrific nature of my symptoms. Maybe this helps explain why.

So bottom line, I'm feeling better with having POSSIBLY found part of the problem. I'm not cured, but I'm doing better, and I'm so hoping the rest of you can find similar relief.

I can't edit my original post, so I'll just post this here...

The primary genetic mutation we're talking about here is found in only about 1 of 120 Caucasians. The prevalence of profound deficiency is 1 in 61,000.

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