Madison Area Lyme Support Group

by Jennifer Crystal

GLA writer and Lyme Warrior, Jennifer Crystal writes about her experience with “crazy dreams” as a result of neurological Lyme disease

Last night I had a dream that a college friend and I were attending a wedding. People from all walks of my life were there. I was running around trying to take care of my cousin’s baby while figuring out how to get on a boat.

When I later described the dream to a friend, she said, “That’s crazy!”

The dream did not seem crazy to me, given how crazy my dreams had once been as a result of neurological Lyme disease. When the Lyme bacterium, called a spirochete, crosses into the brain, it can cause a host of sleep disturbances, including insomnia and hallucinogenic dreams. My Lyme doctor said it was like the spirochetes had made the needle in my brain get stuck. He meant Lyme was making it impossible for me to sleep and, when I finally did doze off, causing vividly detailed rapid fire dreams—many of which were recurring. Some came in levels (there was a dream about me telling someone else about a previous dream); some that were so “active” that I woke up with sore muscles, more exhausted than when I went to bed. Inflammation in the brain caused by tick-borne illness is the reason for these sleep disturbances.

So dreams, like the one I described to my healthy friend, may have seemed crazy to her. But for a chronic neurological Lyme patient like me, it’s about as normal as I can hope to get. The dreams involved no major trauma, which often happens in the worst nightmares. There were no levels to the dream. That is, it wasn’t a lucid dream—I didn’t have the power to change the dream while I was experiencing it, something that often happens when the spirochetes are running rampant in my brain. Nor were they occurring at a hallucinogenic, rapid fire rate. The images were fuzzy and nonsensical, as most healthy dreams are.

Nights like the latter are a blessing to me now, 21 years after getting a tick bite that gave me Lyme disease, Ehrlichia and Babesia, and 10 years after suffering a relapse that brought me to the lowest point of these sleep disturbances.

Let me give you an example of one of my vivid, detailed dreams, recorded in my journal in 2005 (edited for clarity-notes are in parentheses):

I was driving to pick up my brother (I don’t really have a brother) in a police station that looked like a warehouse. The Dave Matthews song “Warehouse” was going through my head in the dream (and still is now that I’m awake). I was watching this scene like a movie. I saw my “brother” open a window upstairs and look down to see me in my car. It was like watching a detective movie. I realized he was able to open the window because it was a very old and rundown building that didn’t have air conditioning. Then I was no longer watching the dream as an observer, but was acting in as myself. I went upstairs to my “brother’s” office. He was on the phone with a Mrs. Vance who’d said she’d sent a check that had never arrived. When my “brother” said, “we send the money directly to the families,” I thought this was some kind of funeral home. Then I saw Mrs. Vance’s check  on the desk in front of me and also an envelope from her with $750 cash. I knew that $150 had been owed and that my” brother” was pocketing the other $600. When he hung up I started to say, “I won’t tell anyone,” but thought better of it because I thought he might kill me if he realized I knew what he was up to. He looked sort of wild and had these big sunglasses on. I said I was at a wedding and had come to pick him up because we needed someone who was good at having fun and pulling pranks and we knew he’d be the right person. He got excited and said, “Let’s go.” We went down the stairs and I realized he was the only one in the building. I asked if he always worked this late (even though it was still light out) and he said, “Well last week I only worked 98 hours.” We got outside and got in my car. I started driving but I couldn’t hit the brakes very well and kept almost crashing. I turned in to a gas station and said, “See, the turning radius isn’t even very good on this car, I can’t turn in to get to the right side of the pump.” My “brother” directed me. Then I was still in the dream, but once again not acting in it but instead watching it from afar like a scene. I said, “Wait, if I were in this dream, I wouldn’t want to have that” brother” with me because he’s bad.” So I replayed it so when he was on the phone I said, “I’m just going to go bring the car around.” Then I ran out and ran down the stairs and got in the car and locked the doors. I was trying to drive away before he came downstairs.

This is a good example of a detailed dream that has levels (at times I was in it, and at times I was observing it) and also one that becomes lucid (when I decide to change the course of the dream). Like most Lyme patients, I woke up so exhausted after a night of 15-20 of these types of dreams—all as detailed as this one, sometimes with a soundtrack or narration playing over them—that I didn’t have time or energy to process them. They were just another symptom that made it impossible for me to get the rest I needed. Most days, I woke up feeling hungover, like my brain was as a pinball machine.

For me and for other Lyme patients I’ve talked to, these crazy dreams are often mixed with hallucinogenic nightmares. For me, they involved trauma I’d never experienced in real life. I’d be burned alive or shot in an elevator. I’d be raped, sodomized, or stabbed. I always survived even though I shouldn’t have. I was afraid to tell anyone the details of those nightmares; I thought people would judge me for coming up with such ideas, or shake their heads and walk away because they didn’t want to hear about such horror.

With the help of my therapist, I found meaning in some of my dreams, such as the recurring one I described in this previous post. I learned that my nightmares were symbolic, too. The trauma in them were manifestations of things that had actually happened to my body. I wasn’t literally raped or sodomized, but my body had been violated, burned, and almost killed by spirochetes. And despite all odds, I had survived.

Eventually, with a combination of medications, neurofeedback, cranial sacral therapy, cognitive behavioral therapy, and talk therapy, I got to a point where the dreams were still intense but not quite as detailed or awful or fast, at least not every night. I still have nights with rapid fire hallucinogenic nightmares, but they are the exception now, no longer the norm. And while the nightly activity in my brain is still busier than the average person’s, it’s manageable. The other night, I even woke myself up laughing in my sleep. There is light—even joy—at the end of the endless nights.

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Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com