Healing Dystonia

When you are sick there is no greater let down than thinking you have the fix and then it turns out not to be the fix.  I thought I had a reasonable plan: I brushed my left leg (the numb and dragging) leg multiple times a day with the hopes of restoring sensation, I wore a weight on my ankle to force my hip and thigh to work harder to pick my leg up, I wore braces to prevent as much of the movement as possible, I held and squeezed rubber balls to save the knuckles in my fingers, I learned creative ways to push my hands in my lap and clinch my teeth to hide the absolutely mortifying movements the best I could, I envisioned the day when the movements would be gone (oh boy did I envision that day) and how proud I’d be to have found a way to heal myself. 

 

However, in the end, what I found was that I had a taurine deficiency (taurine is an amino(like) acid that we normally make), who’d have thunk.  Worse, I asked both my doctors about whether I should take taurine, neither advised it (shock)…but I did it anyways…and THAT turned out to be (for the most part) the answer. 

 

It did not work right away…but I did feel slightly better on it the first day which was encouraging enough for me to continue.  Over the course of the next couple months no one (except me) noticed the movements anymore…and now someone seeing them might just think I was a little restless.  I am sooooo relieved.  That said, the feeling of motification remains.  To survive the embarrassment, because being on my own I had to go out to get groceries, fill rx’s, and go to dr’s appointments…I stopped looking at people, it was just too heartbreaking to see their looks and be constantly reminded of how fall from human I had fallen. I still don’t look at people…and I suspect that healing the impact this illness has had on me will take some time and loving patience for my tired soul.

 

The taurine calmed the too-much-electricity feeling of the movements…which gave me a greater ability to stop it, and to stop it for longer…without too much of a consequence for doing so. In addition to the taurine, I take a medication called Baclofen which is a GABA(like) drug.  To be precise, it is a GABA with a molecule added to it to confuse the neurons into absorbing it.  The Baclofen reduces 90% of the tightening (muscles, tendons, tissues).  Together these two things have significantly reduced this issue.  The diagnosis is a GABA/Glutamate imbalance where I make too much glutamate and not enough GABA…to which the Baclofen significantly helps.  My doctor says (although I am not sure I agree) that this is caused by high aluminum levels (which I have) caused by Lyme bacteria die off (the part I don’t really buy, but can neither refute).  I guess some doctor somewhere (Yasko) said it so it must be true (for her).  That said, I greatly appreciate my doctor and do not have a better answer at this time (even though I am pretty sure there is one)…so that’s where we are for now.