The Tick That Took Me Out 

My story of getting and coping with late-stage Lyme disease—one of the fastest spreading, most debilitating, and least understood diseases in the nation.

click to enlarge Shona Curley, with daughter Sophia Delmon, is coping with Lyme disease. - PHOTO BY PAT MAZZERA
  • Photo by Pat Mazzera
  • Shona Curley, with daughter Sophia Delmon, is coping with Lyme disease.

In summer 2013, I got a tiny tick bite. The nymph (baby) tick was a western black legged tick, the size of a poppy seed. The more common dog ticks are much larger, and don’t carry Lyme disease—but I didn’t know about this distinction at the time.

The nymph tick lodged itself in my belly while I was reading a book, sitting on a patio in the sun on a little piece of property that my husband and I call our “Gypsy Camp” outside of Healdsburg. I absentmindedly ran my hand over my stomach, and felt the tick’s little tiny legs poking out. It hadn’t been on me long—it wasn’t at all engorged. From previous tick bites on my kids and our dog, I knew that if a tick has been drinking your blood, it swells up like an evil grape.

I pulled the tick out with a pair of tweezers, and called my medical provider, Kaiser.

“No need to save the tick,” the advice nurse told me over the phone. “It’s not our policy to test ticks for bacteria. Besides, a tick needs to be on you for over half an hour to transmit Lyme disease, and it is unlikely you would get Lyme disease from a nymph. Just call us if you develop a bull’s-eye rash.”

I had heard of this common skin reaction to a Lyme-infected tick bite; a red, circular rash that looks like a Target logo surrounding the bite, which will be red and raised as well.

Great! I thought to myself. I threw the interloper into the bushes. A rash never appeared.

I never dreamed this bite would devastate my health for the next five years and counting.

Over the next two years, my health slowly deteriorated. I caught more and more flus and colds. I chalked this up to the stress of raising two young kids and running my own Pilates studio full time. I took Sudafed and echinacea and kept going. But by early 2015, it was obvious something was wrong. I had persistent symptoms: ringing in my ears, dizziness, insomnia, an upset stomach. I stopped drinking lattes. I gave up bourbon. I stopped running and took up restorative yoga instead. But the symptoms steadily worsened.

By fall 2015, I was back at Kaiser, and I was scared. I remember starting to cry in the doctor’s office as I described how I felt. The doctor had no idea what was going on. I told her about my tick bite, and she tested me for antibodies to Lyme disease. The test came back negative. So, we struck Lyme from the list of possibilities. She ordered a battery of new tests, each for conditions more life threatening than the last. By the end of all of them, we had no information, and I just felt sicker. The doctor gave me a prescription for sleep medicine.

By summer 2016, I was so sick that I took a leave of absence from work. Making this choice was very hard for me, but my body left me with no other option. No doctor, naturopath, or acupuncturist had any idea what to do with me, and I saw quite a few. For no apparent reason, I was falling apart. I had a fever all the time, and my lungs were constantly congested. I was unbearably anxious. I wondered if I was dying.

During my leave of absence, I voraciously consumed information on diet and herbs to restore the gut and immune system. I lay in bed while my kids were in school, alternately sleeping and learning. I cut out all sugars, including dairy, fruit, and grains; made my own bone broth; and foraged for wild herbs—brewing them in the kitchen like a modern witch. It helped. After three months, my lungs were fine, my fever was gone, and I was able to go back to teaching Pilates part time, despite other lingering symptoms.

Over the next year, I functioned, but I wasn’t well. I developed noise sensitivity. My anxiety worsened. Fatigue and insomnia were constant problems. I kept searching for answers—combing the web, reading books, listening to “biohacker” podcasts, trying new doctors.

Partly by luck, and partly by following this trail of breadcrumbs, I found what is known as a Lyme literate medical doctor, or LLMD for short. LLMDs are certified physicians or naturopaths who specialize in treating patients with Lyme disease. But like the other acupuncturists and naturopaths I saw, treatment with this LLMD for Lyme disease was not covered by my insurance.

I told my LLMD, Dr. Mischa Grieder, at San Francisco Preventive Medical Group, about my baby tick bite and my negative test results through Kaiser. “Nymph ticks are actually quite likely to transmit Lyme disease,” he told me. “It can take less than an hour for the bacteria to infect you. Many people never get a bull’s-eye rash, and most people test negative for antibodies with the conventional medical test.”

Holy moly, I thought. So, every single piece of information I got from Kaiser was wrong.

We ran a $600 test (through IGeneX, a Palo Alto lab) that I paid for, and it came back positive. I finally had an answer, after two years of searching.

That was August 2017.


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