Lyme disease: My story (Part one)

Lyme Disease: My Story For thirteen years I’ve been sick.  I have chronic Lyme disease. (Actually, now the Lyme tests are negative and I’m getting stronger and stronger.  I’m learning to say I had Lyme disease.) This is how it started.

How and when I got infected is a bit of a mystery, but I think it was the blackberry-picking that did me in. Every summer, my dear friend Suzanna and I would drive two hours south, into the Northern Neck of Virginia, between the Rappahannock and Potomac rivers, close to the Chesapeake Bay and beyond that the fresh ocean.  George Washington grew up here; Madison’s birthplace is not far away.  I imagine our presidents here hundreds of years ago in the sticky Virginia summer, in the oppressive heat and weight of the wet air, them with all their proper waistcoats and breeches, Suzanna and I in our shorts, with the beautiful Virginia countryside around us—the same countryside that nurtured these men who built our country.

We spent the day filling buckets full of bursting blackberries, our fingers stained and our skin burning.  For lunch, we sat by the river under a shady tree.  I think that’s where the problem was, when we were there in 2000, nearly a decade ago.  The grass was long, and there were tiny spider-like things crawling along the picnic table bench.  I didn’t think anything of them, except to brush them away, and to be amazed by their diminution—a tinier spidery-thing I had never seen.  (Actually, once when I was backpacking — I was doing a lot of backpacking then — something like it had crawled across my finger.  Sam said it was a tick, and I doubted him before I flicked it away.)

Deer tick on finger - Lyme diseaseI froze most of the blackberries.  Some of them I ate with cream and a bit of brown sugar.  The rest went in the freezer for pies.  (I’d be making them for family gatherings for months from my precious store of frozen black gems.)

I’ve been afraid of spiders all my life.  At some point in college I read an article about the brown recluse, and knew what signs to look for—a red ring, a pimple-like bump in the center, and flesh that started to disintegrate.  So when I noticed the bite on my leg, I began carefully observing it, just in case the flesh should start to die and fall off. (Which I realize sounds crazy.) I assumed maybe something had crawled into the sheets, something that lurked in the walls of my 1950’s apartment, and bitten me while I slept.  When I was a child, my mom told me I should make the bed so that spiders wouldn’t get in it.  (She has no recollection of saying this, but it stuck with me.)  I never learned to love making the bed.  So, spider bite—bed.  That was my thinking.  Scary, flesh-eating spider bite.

With my leg cautiously intact, I came down with a cold and spent Labor Day weekend sitting in the sun reading, nursing a sore throat and a fever.  By midnight—with me still sitting up reading—my throat was so sore that I couldn’t swallow.  I ran to the bathroom every minute to spit because absolutely nothing would go down.  Afraid my throat might be closing up—would I be able to breathe?—I went to the emergency clinic at 3 A.M. The bite on my leg was forgotten.

Whatever was making the glands in my neck swell was a mystery.  The ER doctor gave me thick, clear lidocaine to swallow to numb my throat:  it made me throw up (the pain in my throat unbelievable then).  After that, horse-sized Tylenol with codeine.  I took them home and stood in the bathroom of my apartment until I worked up the courage to swallow—wincing, cringing, screaming in my head, but I got them down.

The next day, I saw my family doctor, who had been treating me since I was 12.  He tested me for things—Lyme disease (but I had never seen a tick — at least, a tick I recognized), mono.  His final diagnosis—and that of the infectious disease specialist I would see a few weeks later—was “a mono-like virus.”  Looking back, I know this was the moment in time when there were two roads:  one to recovery, one to years and years of illness.  My heart hurts to think there was a moment when things might have been different, when everything that went wrong could have been stopped. We had the wrong diagnosis; I went down the second road.  I took steroids—something about stopping my throat from hurting, getting the glands in my neck to calm down.  They actually calmed down my immune system so as to give the infection a warm welcome.

I asked my doctor if we should do antibiotics.  He said no—this was viral, there would be no point.  I remember thinking as I lay unsleeping and exhausted that it was very strange that I got this bite on my leg, and then got so sick, but I thought for sure that was the crazy-obsessive patient in me talking, and since I try not to be a crazy-obsessive, difficult patient, I quieted that voice.  I don’t remember if I talked to my doctor about the bite, but if I did, the conversation went like this:  “I have a spider bite on my leg; do you think that could be related to this?”  “No.”

There are so many things I know now that I didn’t know then.  The tests for Lyme disease are terribly inaccurate.  The ticks that transmit Lyme can be tiny-tiny, the size of a poppyseed.  Many people never know they’ve been bitten, or mistake the bite for a spider bite.  People are often bitten during the summer, and come down with what seems to be an unseasonal cold, and then never get better.

And that was what happened to me.  I never got better.  It’s the most plebeian of Lyme stories.  Aside from the first night, I was never in the ER.  I have not been in the hospital, my speech has not been slurred, I have not needed a heart transplant or been unable to walk.  Mostly it’s been a numbing, crippling exhaustion, which has meant for the last decade I’ve been largely unable to live my life.  I went for years running a low-grade fever and not being able to sleep.  I could not think straight.  Gradually I became the girl sitting on the couch.  I did not want to go anywhere.  I didn’t have the energy to talk to anyone on the phone.  I tried and tried and tried to live my normal life.  I took ballet, like I had for years.  I did a 7-day hike (tired to the point of panic at times) in Montana.  I wrote a book.  But under everything was this horrible exhaustion.  Everything was a struggle—like walking through thick mud.

And that was the beginning of what would be a thirteen-year journey.

Next time… How I got diagnosed

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