literally not since last Wednesday, July 6. Here's my backstory.
I've had Lyme disease since 2012, but was just diagnosed this year. When I first got sick, I went through a period of brutal insomnia that was only treatable with high dose melatonin (around 70 mg). I quickly tapered down to 30 mg and added 7.5 mg zopiclone. For several years this allowed me to sleep somewhat normally.
In June 2015 the Lyme disease flared so badly I became incapacitated, had to go off work, etc. Sleep became poor once again, and melatonin stopped working. Once I found out Lyme was likely what I had, I started treating accordingly (herbs, supps, etc.) and quickly made a partial recovery, including getting back to sleep using melatonin and zopiclone.
Late last year I started tapering both melatonin and zopiclone, getting down to 16 mg melatonin and 3.75 mg zopiclone. I held at this into March 2016, when I tried NSI-189. This drug, taken only once at 5 mg, seemed to mess up my autonomic nervous system, causing labored breathing and intense malaise and cognitive dysfunction, also high BP when laying down (around 140/80) with an irregular heartbeat, according to my machine. These symptoms would come back anytime I took certain things that affect brain function, like caffeine or (for some reason) calcium. I avoided things that affected me and got somewhat back to normal into April, and started doing some light workouts for the first time in about a year. I was feeling better.
In February I saw a "Lyme literate" doctor who diagnosed me and placed me on antibiotics. While on them, I felt improved physical energy but no improvement to cognitive issues.
On May 3 I tried a cardio workout, and this seems to have been the real trigger, the final straw. After around 15 minutes I felt my heart struggling, like I was going to drop dead, so I stopped. That night my BP was elevated w/ irregular beat. My head was out of it. Completely exhausted and depressed, couldn't think straight. Ever since then I've been developing more and more symptoms of dysautonomia: labored breathing, dry mouth and eyes, constipation, frequent urination, orthostatic hypotension (BP drops 30-40 points upon standing and pulse rate rises 30 points to compensate).
My Lyme Dr. thinks these most recent symptoms are all caused by Lyme. He had me take the best autoimmune antibody test on the market, Cyrex #5, which only showed thyroid antibodies ie Hashimoto's (though my thyroid still makes adequate hormones). So he's getting me to see a cardiologist re: my orthostatic hypotension. In the meanwhile I had to stop antibiotics due to elevated liver enzymes, which remain elevated two months later.
Since May the dysautonomia has come and gone, sometimes better, sometimes worse. But my sleep has gotten progressively worse. I went from sleeping 6 hours per night to around 4. I increased my zopiclone back up to a full pill. I had to stop melatonin because it seemed to make all my symptoms worse--just since May though. Then a few weeks ago I began sleeping even less--I don't know how long I was sleeping because I avoid checking the time, but maybe 2-3 hours. Then as of a week ago, I could no longer fall asleep. As soon as I start to fall asleep, I get spasms in my arms and legs, odd sensations throughout my body, and my BP shoots up to around 140/80. Each time I start to drift off, this happens. Zopiclone no longer works, either. It in fact seems to make things worse. The best I do is getting very close to actual sleep, where I start dreaming while awake. I know that if this goes on long enough, people start dreaming ie hallucinating all the time and eventually die.
Seeing my Lyme Dr next week, and I just emailed the sleep specialist/neuropsych I've been seeing since early 2013. Not sure what either of them are going to be able to do at this point.
Some thoughts I've had lately:
- Lyme is the root cause of most of my issues (along with stress... maybe stress is the root cause of Lyme, preventing me from healing).
- NSI-189 jarred something loose in my brain, set off some kind of cascade
- The May 3 cardio workout jarred something loose, set off some autoimmune process. I looked up things like autoimmune autonomic ganglionopathy.
- The dysautonomia and insomnia are definitely related. When you google "dysautonomia and insomnia", you get fatal familial insomnia and its non-genetic variant, sporadic fatal insomnia, which is marked by dysautonomia in its early stages. This is a one in a million disease, but I can't help think of crazy stuff after a week without sleep. (This is interesting, a woman who had a history of Lyme and wound up with sporadic fatal insomnia, a prion disease:
http://archneur.jama...rticleid=795857
That's about all I can think of. Any input is appreciated.
Edited by Omega 3 Snake Oil, 13 July 2016 - 10:28 PM.
