I sighed down at my daughter in the midst of a crowded IKEA store. “You really can’t walk?” I asked doubtfully.
“I can’t put any weight on my right knee,” she answered tearfully, sinking onto a display bed. I assumed it was a strain or injury that would heal itself eventually. In the meantime, we retrieved a store wheelchair for the rest of the day.
Back at home, she continued to experience knee pain on and off for weeks. Finally, the knee became swollen and hot to the touch. She developed a low-grade fever. We took her to a doctor, who took an X-ray, found no injury, and sent us home. It took a second doctor visit before her pediatrician hit on the cause with a slate of blood tests: my daughter had Lyme disease.
That was two years ago, and my daughter is still not back to full health.
She started antibiotics, but the pain didn’t go away. In fact, it spread to her ankle as well. A different antibiotic was prescribed, and we were referred to a specialist. MRIs were taken. A third, higher dose of antibiotics were given. The swelling, hot skin, and fever disappeared, but the joint pain lingered and now included some of her fingers, which took on a permanent crooked appearance and gave her pain after writing at school.
Finally, we were told that while the Lyme disease had been adequately treated with antibiotics, the disease had sent her immune system into hyperdrive, which had triggered the development of juvenile idiopathic arthritis, a chronic autoimmune condition affecting close to 300,000 children in the U.S. (formerly known as juvenile rheumatoid arthritis).
Lyme disease is a bacterial infection spread through bites from the blacklegged tick.
Caught early, most Lyme disease is eradicated with a straightforward course of antibiotics. Early symptoms are fatigue, flu-like symptoms like fever and chills, and a “bulls-eye” rash at the site of the tick bite. (See the Centers for Disease Control and Prevention’s full list of symptoms here.)
Some people, however, as the CDC again point out, never exhibit the telltale rash or other early symptoms of the disease. Also, most people are infected by “nymph”-stage ticks, which are the size of a poppy seed and easy to miss. Further, the symptoms can be mistaken for a host of other common ailments, making misdiagnosis common. Left untreated, Lyme disease can cause joint pain, heart palpitations, severe headaches, cognitive and neurological impairment, and other serious medical issues.
Even once diagnosed, Lyme disease remains shrouded in mystery.
The disease is under-researched, there is a lack of consensus within the medical community regarding it, and there is no blood test that proves it has been eradicated from the body. Some patients feel, controversially, that Lyme disease itself can become a chronic condition. As Michael Specter writes in The New Yorker, aside from its cause, “Nearly everything else about Lyme disease—the symptoms, the diagnosis, the prevalence, the behavior of the borrelia spirochete bacterium after it infects the body, and the correct approach to treatment—is contested bitterly and publicly.”
Too bad, because Lyme disease cases have doubled between 2001 and 2015 to about 30,000 per year, and the CDC thinks the actual number is 10 times higher than the reported number. Regions most affected are the Northeast and upper Midwest. Iowa had 156 “probable cases” in 2016 (the most recent data available), the highest number reported over the previous decade. (Check the stats here.)
My daughter’s treatment continues.
Currently, my daughter takes two arthritis medications–one is a weekly injection that my husband administers. These drugs are paired with two additional drugs to counteract the original drugs’ side effects. And they have helped immensely, but the pain is not gone. Now her doctor thinks occupational therapy may help to correct mechanical damage done to the joints while the infection was active, so we’re trying that next. We’ve also used supplements, acupuncture, dietary changes, topical creams, heat and cold packs, over-the-counter pain relievers, joint braces, and low-impact exercise.
Tick season is here. And while we still love the outdoors–camping and hiking any chance we get–we take precautions now we didn’t think about before. You, too, should spend as much time as possible outside this summer and not worry too much. But consider long pants and sleeves when outdoors, bug spray with DEET–that’s right, I said it–and a thorough tick check and shower at the end of the day (it takes 36 hours for an attached tick to transmit an infection).