July 7, 2020
I did a handful of blood tests a couple of weeks ago. One was for COVID antibodies, and it came back negative. Another was for Lyme disease. It came back positive. But I already knew it would.
The first time I got tested for Lyme disease was back in the winter of 2012. We’d been East for Thanksgiving, celebrating with my husband’s family in Scranton, Pa. The weather was unseasonably warm. Earlier that month, the temperature had reached an historic high in the low 70s. On Thanksgiving day, when I went tramping through a woodsy bible seminary campus with Bill’s cousin, Christine, the high was a balmy 55 degrees.
The reason this matters is because the ticks that carry Lyme lie dormant in the cold, but are active in warmer weather. And there are a lot more of these Lyme-carrying ticks in the Northeast than out here in Los Angeles.
I never saw a tick on my body, nor did I ever spot a bite. Or if I did, I don’t remember it. That’s not uncommon. Estimates vary as to how many Lyme patients actually get a classic “bullseye” rash, but a sizable percentage have no visible sign of infection.
The main thing is, after that Thanksgiving day walk, my body changed. The next day, I was out walking the city’s hills by myself when I became dizzy, and alternately chilled and feverish. It turned out it was a migraine coming on, but the symptoms weren’t usually that strong. That night, I had stomach pain so searing I couldn’t sleep.
The next day, though, I felt fine. We got on a plane and flew home. Then, exactly a week later, I stood up from a chair and the whole room spun around. I went home, lay down and slept for four hours, until one of the kids woke me up to make dinner.
By the time I got tested for Lyme, three weeks after Thanksgiving Day, I could barely get off the living room couch. I’d have these rolling episodes, starting with a heart palpitation, followed by dizziness, shaking and a panic attack, wrapping up with an exhaustion so deep I could hardly keep my eyes open. Only I couldn’t sleep, because I couldn’t calm down. I was frantic, all the time, because I’d become convinced I could die at any moment. I’d never experienced a fear like that before. It didn’t make any sense at all, but there was no talking me out of it. It was a primal thing.
Kaiser, where Bill works and where I’m a patient, has this number-scoring thing it does for Lyme tests. If you score below 119, you don’t have Lyme. If you score between 119 and 159, you’re borderline. Anything above that, you’ve been infected. They do two tests, the ELISA, followed by the Western Blot, if indicated. I don’t know which test corresponds to those numbers and a cursory search online was not illuminating. Suffice to say, when I tested three weeks out from a possible bite, I had a score of 115.
The CDC says test scores are not accurate until four to six weeks after infection. But we (Bill, who ordered the test and I, who requested it) didn’t know that at the time.
The second time I got tested for Lyme was a little over a year ago, in January 2019. By that point, I’d been through years of Chinese herbs and Western antibiotics and various prescriptions and treatments and targeted diets. A doctor in urgent care — the third one I’d seen in nearly as many weeks — listened to my tale of woe, how I’d get better, and then a new symptom would appear, and then I’d get worse, and how, for the last month, I’d been unable to eat more than about a dozen foods without having what felt like an allergic reaction. When I was through, she said, “Did you say you were in Pennsylvania for Thanksgiving?”
She meant in 2018. We go every two years (excluding pandemics). Yes, I said, and I went on a walk in the woods, with the same cousin. But it was bitterly cold, 15 degrees at the warmest, and I was wrapped from head to toe. There was no way, I said, that I could’ve gotten a tick bite.
Nevertheless, she ordered a Lyme test. This time, my number was 186. Bingo — a diagnosis. Only it was one that didn’t make any sense, at least at first. I didn’t have the joint pain typical of Lyme patients. No fever. No flu-like symptoms. And I’d been sick — well, let’s just say, chronically under the weather — for more than six years, on and off.
Then I thought back to 2012, how the bible college grounds were damp and fragrant, how the leaves mushed under our feet and the twigs crackled as we stomped on them. I remembered the days that followed, the symptoms that looked like chronic fatigue and a nervous breakdown all rolled into one. After six months, a Chinese herbalist got me back on my feet. But it was always a shaky recovery, prone to unpredictable and novel relapse.
It turns out that fatigue and panic attacks are common symptoms of tick borne illnesses. It also turns out that Lyme, like COVID-19, is not an equal-opportunity attacker. I’ve read about people who never get off that couch, who find themselves disabled by Lyme as well as co-infections, which many ticks carry as well. I’m a pretty lucky Lyme patient, in that I’ve tested negative for almost all co-infections, and I’m able to cope without too many interventions. I’m even lucky that I tested positive in the first place. Many people with symptoms more classic than mine test negative over and over again, a situation that must be crazy-making in and of itself (and which I’ve had a taste of with this COVID stuff).
The third time I got tested for Lyme was last month. I’m often running some weird symptom or other — unusually tired, or too many headaches, or odd aches and pains — and so my MD did the usual blood counts and liver panel and thyroid check, plus she tossed in a COVID antibody test and, just for kicks, another Lyme test, to see if anything had changed. As usual, all my blood work came back perfect. Well, except the Lyme, which came back better than before: my number had gone down, to 150.
My doctor thought it was a great sign, as did my husband, Bill. It’s so confusing, though, because back when I tested 186, physicians said the score could only tell me that I’d had Lyme once. It could not tell me whether I had an active infection. In 2019, they tried giving me the traditional antibiotic course, but I had an allergic-type reaction after five days and we had to stop. After that, Western medicine was out of tools and ideas.
My primary Lyme symptom seems to be a revving up of my nervous system. I’ve always had anxious tendencies, but since 2012, anxiety has become a beast I’ve had to wrestle to the mat. So what brought my number down, and restored me to a level of health I hadn’t seen in years, was hypnotherapy. I’ve had to duck around my conscious mind to soothe and calm my frantic brain. If you come to my house any day around 3 p.m., you’ll find me lying on my bed, shades drawn, listening to a recording of my hypnotherapist’s voice reminding me I can relax, that I have nothing to do, nowhere I need to be. I don’t know why, but it works.
This coronavirus illness, then, has been scary, because whatever I had in the spring slammed me back on that couch, a place I don’t want to be again. Plus, I spent six years, between my probable tick bite and my positive Lyme test, struggling with an illness that had no name and made no sense. Been there, done that.
I just saw an herbalist today who sent me home with a Lyme formulation. I had a functional medicine doctor last year who wanted to try something like this on me, but I’m so reactive, she didn’t dare. Instead, she sent me to the hypnotherapist, which wasn’t a bad idea at all.
Time, though, has passed. The doctors who said last year that my Lyme score couldn’t tell them how sick I was now say the lower number means I’m getting better. I’d roll my eyes, but I am doing better. I’m too tired, but I’m not exhausted. My stomach still hurts after meals, but less often and less so. And it’s harder and harder to freak me out.
So I’ll try the Lyme formulation. And we’ll see.
It’s a little scary — it’s a lot scary, actually — to go after the Lyme directly. I know that sometimes symptoms flare up in reaction to treatments that ultimately work. But after seven and a half years, the thought of life without Lyme, as mild as this case of mine is, is too tantalizing to resist.
I imagine testing next year, and getting a score of 115 again. Or maybe no score at all. And that idea makes me smile.
Connie's Coronavirus Diary 