The diagnosis

In 2012, I found a tick on my leg, got sick, and tested positive for Lyme disease. It was diagnosed promptly and treated according to the mainstream protocols, which supposedly means the infection was cured.

That was three and a half years ago. That’s how long it’s been since I felt healthy. Three and a half years since I felt like myself. Now, finally, I know why.

This week, I had a long-awaited appointment with a Lyme specialist. After hearing my history and my symptoms, he said I have chronic Lyme.

The bacteria that cause Lyme disease. Photo: Centers for Disease Control

Chronic Lyme is an incredibly controversial diagnosis. Many doctors think it doesn’t exist; they don’t believe the bacteria can survive antibiotic treatment. So when I saw my brand-new internist two days after the Lyme doctor, I more than half expected to get a lecture about unscientific diagnoses and quacks who want to take my money and give me harmful drugs. Instead, she concurred 100 percent with the specialist’s opinion. I wanted to hug her.

I’m still sorting through my thoughts and feelings about this news. Treatment will begin in a couple of weeks, after my lab results are in. It will be a long haul; it could make me feel worse before I feel better; and it might not be a total cure. But I will get better.

Back in 2012 and 2013, when I still felt sick after the Lyme treatment, I made numerous visits to a rheumatologist. He ruled out diseases like lupus and rheumatoid arthritis, then announced: “I don’t have any reason for you to feel bad.” The fact that I did feel bad didn’t seem relevant to him. My then-internist had a similar reaction: “I think you’re going to be okay,” he said. Both of them recommended more exercise, brushing aside the fact that I was then walking five miles a day. They clearly thought my troubles were psychological, stemming from grief over my father’s death a few weeks after that 2012 Lyme diagnosis.

Since then, two of my non-MD health care providers raised the possibility of chronic Lyme. I didn’t know whether it existed, and I didn’t know where to turn for answers. Despite my frustration at not being taken seriously by doctors, I was not prepared to buck the medical establishment when I felt so uncertain myself. Were my fatigue and aches all psychologically based, or was there also some medical cause? My therapist, who thinks everything is about my feelings, clearly leaned toward the it’s-all-in-your-head theory.

Finally, last October, I went to see a psychiatrist. Should I try anti-depressants, I asked. She said yes—but first, she said: “I think there’s something physiological. I’m worried you might have central nervous system Lyme.” She gave me the Lyme specialist’s name and phone number. I called the same day. He couldn’t see me until January.

Between that day and this week, as I eagerly waited for my appointment, I was unsure what to hope for. I definitely wanted yes-or-no answers. But which did I want: yes or no? “Yes, you have a serious illness that’s hard to treat”? Or “No, you don’t have Lyme”—so now what?

On balance, I guess I wanted a yes. Or at least, I am greatly relieved to have a diagnosis and a treatment plan. I’m greatly relieved to be taken seriously by doctors who know what they’re doing and are as committed as I am to helping me get better. I’m deeply grateful to the doctors who are helping me figure this out, and to the providers who suggested chronic Lyme two years ago. I’m optimistic about healing. Miracle of miracles, I’ve got a whole team of providers who are on my side and will work together.

As for the Mary Oliver Challenge—my quest to let the soft animal of my body love what it loves—I feel relief on that score, too. My fatigue, my aches, my difficulty getting stuff done: they’re not my fault. I can let myself off the hook. There’s no reason to beat myself up for not feeling well, no reason to think I should be able to just get over it.

Glad I have Lyme? No. But glad to know it.

What is the Mary Oliver Challenge? Glad you asked. You can read about it here.

2 thoughts on “The diagnosis

  1. This gives people who feel there is something not right with them hope! It’s so trialling go to the doctors and being made feel like an idiot or like you’re faking it. Glad you got your diagnosis, but also sorry to hear.


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