Musing about Lyme

In mid-December I took myself down to the Island Health Clinic, explained to my friendly practitioner that my left knee had certainly improved since it got whacked by Lyme disease and the Baker’s cyst last July but the improvement had stalled well short of normal, and said that I’d like to see a knee person. I’ve now got a late January appointment with an orthopedist.

I suspect that my ongoing knee problem is related to the Baker’s cyst. Baker’s cysts happen behind the knee. I can’t bend my left knee enough to sit back on my heels.

Baker’s cysts often result from injury to or inflammation of the knee. Arthritis can cause inflammation of the knee. Lyme causes, or mimics, or is (I’m not sure which) an arthritis. So my theory is that the Lyme caused the Baker’s cyst, which then ruptured and caused my left leg to swell up dramatically from above the knee to the foot. (For the whole story, see “My Afternoon at the ER.”)

Baker’s cysts, I’ve read, generally resolve after the underlying cause is addressed. Mine, it seems, it still hanging on. So I’m wondering: Do I still have Lyme?

Tick tick tick

Tick tick tick

Hmm. When my leg swelled up, when I took myself first to the clinic and thence to the ER, Lyme was the last thing on my mind. True, I pick ticks off myself and Travvy on a regular basis and occasionally get bit, but Lyme makes you sick, doesn’t it? My leg was screwed up, but I didn’t feel sick.

My ER doc, however, was suspicious. After drawing fluid from my knee, she was more suspicious. She ordered an ELISA test, the one most commonly used for Lyme. It came back positive. I took doxycycline for 21 days. The swelling in my foot and lower leg went away. The swelling around my left knee decreased noticeably but didn’t disappear. Slowly flexibility returned to my left knee.

When I walk, it no longer feels as if bone is scraping on bone. I don’t have to use the banisters to swing myself downstairs, to avoid bending the left knee too much. Going upstairs, I no longer take a half step at a time. But going up and down stairs my knee still doesn’t feel right. Five months after my trip to the ER, it can do maybe 80 percent of what it could do at the beginning of the summer and what right knee can do now.

So do I still have Lyme? How would I know if I did?

There’s the rub. I don’t feel sick, but I never did feel sick. Follow-up tests for Lyme are notoriously unreliable, both for dogs and for people. Did I really have Lyme in the first place? The ELISA test said so. Positives and negatives can both be false, but something caused the Baker’s cyst and given my residence on Martha’s Vineyard and my intimate acquaintance with ticks the real surprise is that I didn’t get it sooner.

No, not quite. The real surprise was that the ELISA test said that I did get it sooner. At some unspecified time in the past I’d already had Lyme. I had no idea. Not only could I have Lyme without feeling sick; I could have Lyme without knowing it and it could go away without being treated.

We talk about Lyme and other tick-borne diseases (TBDs) a lot on Martha’s Vineyard. If you haven’t had it, you know someone who has — or, more likely, quite a few someones. If you’ve got pets, chances are at least one of them has had it at least once. You probably know at least one person with chronic Lyme, which many doctors don’t believe exists. I know one person who’s had Lyme four times and each time it manifested in a completely different way.

Lyme and the other TBDs have become a catch-all explanation for any ailment, physical or mental, that can’t be readily explained by other means. They can take any form or no form at all. You can get one or not get one and maybe you won’t know if you did or didn’t; if you take your antibiotics, maybe it’ll go away and maybe it won’t and you might not know about that either. Quite a few people I know say it never goes away.

I poked around a while looking for answers, definitive answers, backed-up-by-scientific-research answers. There aren’t many. The scientific establishment is way behind the eight-ball on this one.

One medical website I visited laid out all the myriad trickster symptoms of Lyme and then chirpily reassured us: “Fortunately, the cause of Lyme disease is known and the disease can be prevented. Essential to prevention is the avoidance of deer ticks.”

Good luck with that, thought I.

Anecdotal evidence is pretty much all we’ve got. Crowd-sourced research. It’s one of those frustrations I’m trying to live with. Like I have a choice? What I’d like in the new year is a left knee that works as well as it used to.

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About Susanna J. Sturgis

Susanna edits for a living, writes to survive, and has two blogs going on WordPress. "From the Seasonally Occupied Territories" is about being a year-round resident of Martha's Vineyard. "Write Through It" is about writing, editing, and how to keep going.
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