Guest blogger Jennifer Crystal discusses how much Lyme disease can disrupt the sleep cycle and one option for dealing with it.

By guest blogger Jennifer Crystal

Recently I was out for a friend’s birthday. After a couple hours and my third seltzer with lime, the lights in the bar dimmed and the music volume went up. I glanced at my watch: 10:00 p.m. “Pumpkin time,” I said to my friends, rising to gather my things.

“You are starting to look a little orange,” one of them joked.

People who know me and know my story are gracious enough to make light of my early bedtime and let me go like Cinderella, because they know what’s at stake if I don’t stick to a set sleep schedule.

In my early days of illness, before getting an accurate diagnosis, I experienced severe insomnia. No matter how late I went to bed, I began waking long before dawn, listening to the quiet hum of my sleeping household and eventually the incessant chirping of birds outside my window. I tried reading. I tried listening to soft music. I tossed and turned and tried deep breathing exercises, but I could never fall back asleep.

Soon the restlessness crept into the beginning of my sleep cycle. Though I was completely exhausted, I’d lie awake for hours, growing more and more tired and frustrated. I begged and prayed for sleep, bargaining that I’d take better care of myself forever or never say anything bad again or never ask for anything again my whole life if I could please just sleep for ten minutes. But sleep wouldn’t come. I dangled right on the precipice, even snoring in my waking state, hanging in that last moment right before my brain should have turned off.

I tried old tricks of counting sheep. Counting backwards from ten didn’t work. Neither did counting from 100. When I got all the way back to one sheep from 1,000, I gave up and tried singing myself lullabies. These, of course, got stuck in my head, and I spent the night listening to “Twinkle, Twinkle Little Star” try to beat out “All the Pretty Little Horses,” with a side player of “Hush Little Baby.”

This neurological overdrive was one of many signs that something deeper was going on than my original diagnosis of chronic Epstein-Barr virus. I did indeed have that illness, but it was the underlying tick-borne diseases that were upsetting my circadian rhythm.

Finally getting an accurate diagnosis, however, was not the answer to my problems. Once I started intense antibiotic and antimalarial treatment, I experienced a Jarisch-Herxheimer reaction, which is when toxins are killed off faster than the body can eliminate them, making the patient feel worse before better. My sleep disturbances hit fever pitch as the spirochetes burrowed deeper into my central nervous system. When I finally did sleep, it was, unbelievably, less restorative than the endless waking hours. I dreamed in excruciating detail of trauma I’d never experienced: rape, sodomy, stabbing. I might have ten to twelve of these nightmares an hour. I died over and over, yet somehow always lived to witness my own tragedy.

Other dreams were not nightmares but hallucinogenic mish moshes of everything I’d read, heard, seen or thought about. Random people from my past mixed together in crazy scenes. Sometimes I dreamed in levels: instead of waking from one dream, I’d slip into another in which I was telling someone about the previous dream. Often I traveled, exploring places I’d never visited in real life, waking with tired legs as if I’d been walking all night. I’d look up the places I visited in my dreams and find that what I’d “seen” was accurate. I had some intensely beautiful lucid dreams. But while the fodder of my nights was at times fascinating, it was always exhausting. I wasn’t getting the rest I needed to heal.

My Lyme doctor called in various sleep aids. Some helped to a degree, but none touched the dreams. It seemed there was no medicine that could dig as deep into my brain as the spirochetes could.

I did a sleep study at a local hospital. Recognizing my extreme duress, the director of the program immediately swept me away from interns who wanted to diagnose “restless leg syndrome” and took me under his wing. Nationally recognized as a leading researcher, academic and clinician in the field of sleep medicine, this doctor introduced me to a technique called neurofeedback. Similar in concept to biofeedback, neurofeedback is a computer-based technology that re-trains the brain to allow restorative sleep. “Western medicine helps people in crisis,” the doctor said, referring to the heavy prescription sleep aids I’d tried. “But Eastern philosophy gets at the underlying problem; both are necessary for long-term health.”

I was wary that a non-invasive treatment could help my intense symptoms, but I was desperate. I agreed to try a session, which turned out to be a relaxing and easy experience. The doctor placed small sensors on my scalp and ears, similar to those used on the skin in biofeedback. These sensors were connected to a computer that read my brainwave activity and subsequently provided information back to my brain. Throughout the session, I listened to gentle music and watched a visual representation of it on a screen. Every so often I’d notice the music skip. These interruptions, linked to my turbulent brain activity, signaled my brain to self-correct.

During my first few sessions, the doctor showed me a picture of my brainwaves; they were wild, both left and right hemispheres firing so erratically that the data couldn’t fit on the screen. After many training sessions, we watched my brain level out, the waves centering and relaxing. At home, I started to feel the effects of these brain workouts. The crazy dreams started to dissipate. While I still needed a low-dose medication to fall asleep, I was able to sleep restfully through the night. Perhaps most blissfully, I was finally able to fall asleep on my own in the afternoons. These naps relieved some of the daytime exhaustion and allowed for more refreshed evenings.

And that meant I could go out at night. I can now rally and celebrate a friend’s birthday. But I still need to do my part and exercise good sleep hygiene. This means calling an early “pumpkin time,” so that my bad nights remain few and far between and my days continue to be functional. That’s a spell I’m not willing to break.

For more information on neurofeedback or to find a practitioner near you, visit www.zengar.com.

Lyme survivor Jennifer Crystal, MFA, is a writer and health care advocate in Boston. Her website is www.jennifercrystal.com. Email her at jencrystal5678@gmail.com.