Between 2012 and 2014, Tracy Jakich Davis’ 14-year-old son, Jaden, developed a host of mysterious symptoms that more than a half dozen doctors near Phoenix, Arizona could not piece together to form a diagnosis: a rash that looked like ringworm all over his head; swelling and pain in the knees that kept him from playing basketball; pain in the fingers so strong he couldn’t grip a golf club; a suppressed immune system that caused him to pick up viruses every four to six weeks; and, finally, severe migraines with blurred vision.

When Jaden was finally diagnosed with acquired Chiari, or a brain herniation caused by a spinal fluid leak, in November 2014, doctors rushed him into brain surgery. However, that only made things worse, according to his mother, and they were back in the hospital on multiple occasions for intolerable pain that ultimately spread to his teeth. At the emergency room in unbearable agony, an attending physician sent him to have his two front teeth pulled, Davis said. Yet that didn’t work to alleviate his pain, either.

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In the end, it was Davis who found the diagnosis for her son two excruciating years later while searching online through various Facebook groups for children with chronic pain. A woman had posted about a bullseye-shaped rash with a list of symptoms that remarkably resembled Jaden’s. That’s when Davis remembered the strange rings on Jaden’s head after the camping trip.

“You think, ‘Okay, now we have the answer and we can get it treated,” Davis told Salon in a phone interview. “I went to his neurologist and said ‘I think I know what this is,’ and they wouldn’t take it seriously.”

“I went to his neurologist and said ‘I think I know what this is,’ and they wouldn’t take it seriously.”

Yet finding her son’s diagnosis was just the beginning of a long journey to getting him help. After meeting a doctor who confirmed her son had chronic Lyme disease, formally known as Post-treatment Lyme Disease Syndrome (PTLDS), Davis ended up spending more than $300,000 treating her son’s condition and ensuing musculoskeletal pain before she lost count of how much she’d spent.

Many doctors didn’t accept her insurance and the costs of treatment were too high to continue long-term. One doctor they finally felt was equipped to treat him died a week after their first meeting. At one point, they were flying to Maryland to see a doctor who offered treatment at an affordable price, but the commute became impossible when her son’s pain left him bedbound.

Today, Jaden has nearly completed an associate’s degree in applied science and wants to one day become a physical therapist, inspired in part by his own experience with years of physical therapy. He has tried dozens of therapies to treat his chronic pain but still hasn’t found any long-term solutions to manage his underlying PTLDS.

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For a subgroup of patients, including Jaden, debilitating symptoms persist for years after their initial Lyme disease diagnosis. Yet despite a concerning increase in tick bites and Lyme disease as tick habitats expand due to climate change, the science on how best to treat chronic Lyme disease is “limited, emerging and unsettled,” according to the Centers for Disease Control and Prevention (CDC).

The incidence of Lyme disease, caused by the Borrelia burgdorferi bacteria transmitted in black-legged ticks, nearly doubled between 1991 and 2018, with roughly half a million........

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