Week 16: Lyme

July 7, 2020

Baptist Bible Seminary near Scranton, Pa.

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.

Day 38: Stuck

May 4, 2020

Photo by Wendy Wei on Pexels.com

I feel like I should be celebrating. Our governor, Gavin Newsom, just announced the easing of some stay-at-home rules, starting as early as the end of the week.

We’ll be able to buy clothes and flowers and basketballs from actual stores. Okay, they’ll have to bring purchases to the curb (I think that’s what he’s saying). But it’s a start. It’s like cracking the window and letting in the spring air after a long, hard winter.

But I’ve spent today intent on the virus. Not in the general sense, either; in the specific. In the way it refuses to leave my body.

I’ve tried so hard to be patient and thoughtful, to treat my health with the careful, ginger touch befitting an antique China doll.

But still, the virus comes back.

If I walk up Mar Vista hill, it comes back.

If I do a 15 minute exercise video, and then two days later do a 20 minute exercise video, it comes back.

If something stressful happens, it comes back.

If I eat food that aggravates my delicate stomach, it comes back.

If the plants bloom in the garden outside my bedroom, and my allergies flare, it comes back.

I don’t mean to say I’m lying around all the time, curled up on the couch, shivering and aching from head to toe, like when this first started. I’ve never popped a fever. I’ve never been short of breath.

But I still get some body aches and some headaches and some fatigue and some chest pain. Sometimes I wake up at 3 a.m. and my stomach hurts and I want to throw up and I’m wondering if I should head to the bathroom, only I’m so dizzy I end up lying there, debating which is more likely, vomiting or tripping. Sometimes — well, this morning — I finally got out of bed and stuck my finger into a pulse oximeter because my chest felt like someone slid a corset around it and pulled and the little device said 93 — which is just a touch too low.

But then I had some tea and puttered about the kitchen, and about three quarters of an hour later, I tried the device again and it now showed a perfect pulse ox of 99. The nausea drifted away, coaxing the dizziness along with it. The chest and body and head aches diminished, until they were mere whispers of their former selves, just a tension I only noticed if I stopped to inquire of myself.

It turns out I’m not alone in this. The prevailing wisdom is a mild case of the coronavirus should span no more than two weeks, before disappearing into the ether, like any other cold or flu. But like so much else with this virus, the prevailing wisdom is a pastiche of observation and wishful thinking. It may also be more appropriate for men than for women.

The South Korean government has been tracking relapse cases of COVID-19. Out of the 163 people they are following, 109 (or two-thirds) are women.

Another risk factor for relapse may be a pre-existing condition. I’ve had Lyme disease in the past, which may or may not be active these days (my understanding is it’s impossible to tell, because my positive Western Blot test only confirms that I was exposed, not that I’m still fighting the infection). But the one gift the Lyme seems to have left behind was a case of IBS that can flare to truly epic proportions. I’m working with physicians and therapists and herbalists on changing things, but at the moment, a dinner with onions and garlic will keep me up with stomach pain half the night.

A woman who struggled to recover from the coronavirus created a Slack group for others like her; when she surveyed her members, two-thirds reported having a pre-existing condition, such as seasonal allergies or asthma.

I joined this Slack group today, as well as a similar group on Reddit. While it is alarming to see channels like #60plus-days, there’s comfort in seeing I’m not alone, and, as appalling as it sounds, in reading about people who are worse off than I am. Day 40 of a fever, anyone?

To get this sickness is to tumble into a world of conjecture, where prayer feels nearly as potent as medicine.

I keep thinking about this woman, Laurie Garrett, whom Frank Bruni interviewed for his column in yesterday’s New York Times. She’s a Pulitzer Prize-winning journalist who’s been predicting a pandemic like this for years now. She pictures the pandemic coming in waves, hitting Houston this time, Boston the next, going and going and going on.

“I’ve been telling everybody that my event horizon is about 36 months, and that’s my best-case scenario,” she told Bruni.

What we don’t know about this virus could fill Donald Trump’s White House and spill out onto the South Lawn. Whatever we do, however we go forward from here, we need to remember that. Surprises lie ahead. Danger lies ahead. But it seems like we have to try. Doesn’t it?

On a side note, I’m not sure how often I will continue to write this blog once the world starts to open up again. I think I will keep it going, at least for awhile, but possibly not every day. Like with everything else, we’ll just have to see how it goes.

Day 1: Waiting for test results

I’ve got articles to report. A dog to walk. A novel to write. Kids to soothe. A house that’s gathering grime.

But as I go through my day, there’s this ticking in the background. Sometimes it’s so loud I practically can’t hear anything else. It’s the sound of the clock counting off the minutes, hours, days until I get my test result.

On Monday, three days after a walk that so exhausted me that I spent the rest of the day in bed, I got tested for the novel coronavirus. I had a cough, weakness and dizziness, but no fever. No breathing issues. No cancer diagnosis or other official underlying health issue. Not one item on the short checklist of conditions that should make me eligible for one of these precious tests. What I did have was a husband who’s an internist, who the system decided needed to know if he had the disease in his house.

I know, it’s not fair. But it’s also not fair that we have to live with the fear of him wading every day into an ocean of disease, exposing himself to illness every minute he’s at work, possibly bringing germs home with him when he returns.

The next day, after our 16 year old daughter came back pale and shaky from her walk, my husband couldn’t take the stress anymore either and got tested, too.

Three days later, I still haven’t heard anything. He got his results back in 16 hours — negative. Again, fair-not fair.

So I wait. We wait, my husband, me and the three kids, all five of us. I shuffle along in a netherworld, not quite well, not quite sick. I can walk the dog, as long as I only go two blocks (usually, I shoot for 1.8 miles). I can do my freelance writing work, as long as it’s only an hour or two at a time, and I lie down in between. I don’t have the energy to cook or clean, but that’s okay because no one wants me puttering around the kitchen.

Just in case.

I wear a mask whenever I leave my room. Just in case. Mostly I stay in my room. Because, you know, just in case. My husband’s sleeping in our middle child’s room. Out of an abundance of etc etc. And yet he still uses our bathroom. And no one follows me around with a spray bottle of Lysol, wiping away the virus I may be shedding. I mean, I do emerge from time to time. I need tea. Lunch. And someone’s got to change the laundry from the washer to the dryer.

(For those of you who are wondering, our oldest, L., has gone from kitchen novice to nightly chef in the blink of an eye, and we are all so very grateful. E. and S. are crushed with schoolwork, helping out where they can. B. comes home from clinic and does a second shift of dishes, laundry and general household management. More on these efforts in a later post)

In other words, we are half in and half out of COVID-land. We don’t know what to believe, and what not to believe. And I don’t know what to wish for, when that damned result comes back.

If I have the coronavirus, we will all be quarantined. My husband may not be able to save the world — his favorite endeavor — but be stuck at home, doing telephone visits. And I will find myself on a trajectory that is both universally known and individually uncertain.

But if this isn’t coronavirus, then why can’t I get through a day? And if I don’t have COVID-19, what would happen if I do get it, as fatigued as I currently am?

Tick, tock. Tick, tock.