Thursday, January 12, 2012


Yesterday Dr. Ross laid out a plan for me to stop all my supplements-- just go cold turkey. And why not? After all, my physical energy level is good, my mental concentration is good, and recently my sleep is good. The thing that is keeping me from having a normal life is the detox protocol-- or is it?

Last March my sleep, which hasn't been good since I got sick, worsened and worsened, until by June it had been months since I'd slept eight hours a night. Six was the norm, seven a victory (although it never felt all that victorious). I woke up most mornings after six hours of rest thinking, "please kill me now."

In July, diagnosed with a genetic liver disorder, I went on Cholestyramine. But the Cholestyramine alone had me still pretty miserable, so in addition my naturopaths added in all sorts of support—Bentonite clay, herbal teas, fiber, enemas (because the Cholestyramine made me constipated), herbal sinus sprays, saunas, Epsom salt baths. It worked. I was no longer having insane allergic attacks, I wasn’t wiped out with exhaustion or constipation or aching limbs. By the last week of August I was sleeping eight or nine hours half the time, seven the the other half. I went through a rough bit again in November, but by December, eight had become the norm.

But to sleep, I've had to keep doing the detox. And the detox is so time consuming that it obliterates most everything in its path, particularly writing, which means particularly my soul. As my hours of sleep have increased, so has my level of frustration.

But when Dr. Ross said I should first cut down my Cholestyramine, then go off all my detox meds, my first reaction was apprehension.

Why would my dream of being free of my detox prison make me feel tense? My body was saying I wasn’t ready.

But Dr. Ross explained I might have developed physiological dependence on all the supplements. My body was just so used to having herbs and supplements pumped into day and night it that it didn’t know how to operate without them. Logically it made sense. By the end of the appointment he had me convinced.

“It will take three to four weeks for your body to adjust,” Dr. Ross said. “In the meantime, you could be pretty miserable and have trouble sleeping, so just wait it out.”

Of course, it could be a low level of active Lyme disease causing my continued need for the supplements. But we won’t know until my test results come back in three months. Or I could need the supplements for detox support, but I wouldn’t know that until I was through the four weeks of cold turkey.

“There are some people who are just left with sleep disturbance even after they get over Lyme disease,” he said we were winding things up. “We just manage it with meds.”

“Ugghh,” I said. “That’s not an acceptable possibility for me.”

I called the Poet after my appointment and he psyched me up to go off the supplements.

“This stuff has been making you miserable, sweetie. Ross is right. Just stop them all,” he said. “It might be brutal, but don’t worry. I’ll support you through it. Take the month, don’t worry about whether you sleep or not. Your only goal should be to watch as much Netflix as possible. It will be like a vacation for you.”

It didn’t sound like a vacation. A vacation would be waking up rested, writing every day, going to a dance class in the evening, or for a long run, and sleeping nine hours each night. But maybe I’d get there if I dove off this cliff into the cold-turkey canyon.

Yesterday I took the first step and cut my Cholestyramine in half—was supposed to do that for a week before I deep-sixed the rest of detox. I woke up this morning way too early with my body taught as a high wire. Things got worse from there.

At 9 I called my mind-body therapist, Jeanette, whom I’d been working with for years. Luckily, she had time to do an appointment with me at 10:30. I thought the relaxation therapy would help my body adjust to the decrease in meds, but as I talked things through and paid attention to how my body reacted, it was clear I needed more than that.

“I’ve worked so hard just to get things normal, to clean the mold out of the apartment, to find new clothes that fit me [I lost weight on the Cholestyramine], to clear away the sinus infection and do all the detox so I can sleep again, and now that I am sleeping Dr. Ross wants me to go through insomnia again. I just want things to be stable.” Just the thought that I would be starting on another round of physiological upheaval had me in tears. Willingly putting myself through more insomnia felt like psychological sabotage.

“I almost feel like if I put myself through more insomnia now, I might do permanent damage to my sleep patterns, and I’ll never be able to sleep well again.”

Truly, I just needed things to be dependable again. I don’t like the detox routine, but I know it, and by now there are dependable things about it—sleep being a big one, and my daily routine of when I eat and exercise and nap being the other. Just flying home for Christmas had disturbed my routine enough that I hadn’t slept well. Now that I was back in Seattle, I’d really been looking forward to things being normal, with no hurdles or upheavals or changes in routine.

Jeanette agreed.

By the end of my appointment with her, I had no doubts. I would do what I had to do to sleep, so that I might just have two or three consecutive months of normal sleep—something, I now realized, I needed more than I needed time to write or freedom to go on a trip or any of the other things I fantasize about doing when I’m done with Lyme.

Because I’m sure eventually I will be done with Lyme. So sure that I don’t need to rush it. The thing is, when I get there, I want to be done with Lyme and done with sleep disturbance, too.

No comments: