"What Are You So Worried About?"

Lyme disease is not a joke.

Note: I’ve changed some names and identifying details in this story to respect the privacy of the people involved.

July, 2019 — Tivoli, New York

After the week described in the previous piece — when symptom after symptom broke out — I finally took action. I searched online and found a local medical practice with an infectious disease department.

“Which doctor do you want to see?” said the representative on the phone at the clinic.

“Whoever. I don’t think it matters,” I said.

“Ok. You will see Dr. Curtis Kane on August 19th. He’s the best infectious disease doctor in the area.” This was the first time I had made a doctor’s appointment in the United States in more than 20 years.

It all felt very new to me, and I was surprised I had to wait three weeks to see him.

A Fishing Expedition

I explained to Dr. Kane what had happened in July. A medical student examined me, and then I was asked a series of questions — some slightly invasive (had I ever smoked crack? No).

“This could be 10,000 things,” he said. “We’re going on a fishing expedition. Go down the hall to the lab where they’ll draw thirty vials of blood. Come back in two weeks for the results.”

Then, as an afterthought, he said, “Peace.”

Peace?

It caught me off guard. The word didn’t quite match the man — or at least, not how I expected him to speak. It was my first hint that Dr. Kane was a little quirky, though clearly sharp.

I left the clinic with a two-page lab requisition filled with codes and lab names that looked like Greek to me. I turned to Google to look them up. I saw that he was testing for several infectious diseases, including HIV, and to my great surprise, also Leukemia and Lymphoma. Really?

I didn’t see that he was also testing for Lyme disease and related co-infections because these still were not on my radar.

That’s when it hit me — something serious could be going on.

Arriving at the lab, I was scared because I knew how much blood was to be drawn, and needles have always made me squeamish.

Oh, the familiar tourniquet and needle prick — “little pinch” — of a laboratory blood draw that would become all too familiar. Vial after vial, the phlebotomist at the lab drew one after the other. Plunk. They dropped into the plastic containers, so many of them.

Two “sticks” (a term I’ve always recoiled at) and 30 vials of blood later, Dr. Kane had everything he needed to understand what was going on.

“You ‘Just’ Have Lyme”

September 4, 2019 — Kingston, NY

Test result day. I found myself full of anxiety again, driving from Tivoli to the clinic to get my results, so much so that I thought I was going to pass out.

Checking in, I was weighed (do you find that annoying too?), and the RN took my blood pressure, which was high at 130 over something because I was so nervous. With kindness, the nurse told me to take a “yoga breath” and brought me into Dr. Kane’s office, where he was waiting with at least 15 pages of lab results.

“What are you so worried about? You just have Lyme,” Dr. Kane said, without any sense of irony.

What!? Lyme disease? Seriously? That thing everybody else except me gets from ticks? I was dumbfounded because I knew next to nothing about the disease, despite growing up in New York, where Lyme is endemic in many areas. And I certainly did not remember a tick bite.

After reviewing the rest of my results, which were all normal except for a very high Sedimentation Rate (a marker of muscle inflammation), Dr. Kane informed me that I would take 28 days of the antibiotic Cefuroxime Axetil* (Ceftin) and come back in two weeks for a check-in.

He also shared some of the digestive side effects of the drug, and that in 10% of cases, Lyme becomes “disseminated,” warranting further intervention.

I’ll get to that later because I was in that 10% of cases.

By this point, my mom had arrived at the doctor’s office. When I told her it was Lyme, she teared up — relieved it wasn’t anything worse, and assuming, as many do, that it would be easily treated. I assumed the same.

Off I went to CVS down the road and picked up my prescription — one 500mg tablet in the morning and one in the evening, taken 12 hours apart with meals.

That will do the trick because I “just” have Lyme, right?

I would find out it wasn’t so simple.

* I don’t know why Dr. Kane prescribed Ceftin instead of Doxycycline, which is often the preferred first-line of treatment for Lyme disease.