After the phone call, I realized that our pediatrician had an approach, a way of talking about a delicate subject that he had used many times before.

After ten years of near-perfect health, my daughter had become a high-maintenance patient, in and out of the office at least a dozen times in the past year, with many phone calls between visits.

A year earlier, I had found the tick in August. In September, the fever began, and then the horrible wracking cough.  Six weeks later, the fever escalated over several days, then finally broke. The intensity of the cough began to diminish. We all breathed a collective sigh of relief.

But a few weeks after the fever ended, the weird stuff began. Soon, I could predict, on a six-week cycle, the onset of mysterious ailments:  A staph infection on the toe, then on the index finger. An unrelenting headache. Weeping behind the ear. More finger infections. Blood work that suggested off-the-chart allergies, or a parasite, but no evidence of either.

By June, my daughter had missed a third of the school year. When she was feeling good, life went on as usual: Odyssey of the Mind, cross-country, hiking, travels. Every time an infection cleared, I thought we had turned the final corner.

Now, as another school year commenced, our concern centered on a throbbing pain in my daughter’s mouth that had begun with a cold sore, and then spread to her lower jaw. The gum was now recovered, pink and healthy. But the pain remained.  We paid $500 for an x-ray to see if an abscess was in the jaw. Nothing.

Then she woke up with another throbbing finger, leaking pus. As usual, I attacked with my full arsenal: hot water soaks, yarrow poultices, antibiotic ointment.  But the infection remained. We started Augmentin, which we had used several times before. The jaw continued to throb. Overnight, the finger turned hot red to the knuckle.  Cefdin was prescribed. After a couple of doses, the throbbing began to ebb in the finger — and in the jaw.

Then the phone rang.

“I’m very concerned about Jenny,” the pediatrician said.

Finally, at last, after all these months, the doctor was concerned enough to call.  A feeling of relief washed over me. Maybe now the medical professionals would ask more questions, would probe more to figure out what was going on.

“I’m concerned too,” I replied.

“I’m very concerned,” he repeated, and paused. “I think your daughter needs psychological help.”

The mismatch between his words and what I expected to hear was so great that I had to pause and decode, almost as if the doctor was speaking a foreign language I could barely understand.

I took a breath. “What I’ve learned,” I said, “is that when something is mysterious, the fallback diagnosis is psychological.”

After I hung up, I was shaking and trying not to cry, because I didn’t want to scare my daughter. I felt powerless. The doctor who I thought was going to help make my child well was washing his hands of us. Although I wanted an answer, a diagnosis, what I most needed was a sense that the doctor was our partner in solving this puzzle.

Fast-forward through another year.  Days and weeks of missed school.  More finger infections. Five weeks of stabbing abdominal pain, a short break, then months of unrelenting nausea. Many visits to the acupuncturist, the allergists, the gastroenterologists, and the naturopaths.  X-rays, an ultra-sounds, CT scan, and endoscopy. Every sort of rare condition ruled out.

“Is your daughter being bullied at school?” the family practice doctor asked.

All along, I had asked about Lyme Disease. When I pulled the tick off my daughter, it left an itchy red welt, but no bulls-eye rash. The Western Blot had come back negative. No joint pain, no Bell’s palsy. No, it couldn’t be Lyme Disease.

Finally, we met with a Lyme Disease specialist, a doctor who doesn’t operate in the box that constrains mainstream medicine in making this diagnosis. “I’ve seen these symptoms before,” he said after reviewing my daughter’s list of ailments. After more testing, he prescribed four to six months of antibiotics, and various supplements.

2400 grams a day of amoxicillin was daunting, but we took the leap. September began with another attack, pain in the ear, then the abdomen. But we weren’t frightened. We had a name for what was causing the pain. The antibiotics would kill off the bacteria that were digging in and causing problems.

In February, my daughter completed six months of antibiotics.  She had some bumps along the way, but has been free of all symptoms since then. I am not 100% certain that she had Lyme Disease. But I’m certain that she had an infection caused by that tick bite.

I had long worried about Lyme Disease. But when the doctor diagnosed my child with chronic Lyme, I wasn’t scared.   Now, we could focus on getting well.   The scariest moment in our travels with Lyme disease was the day that the pediatrician called.

Additional resources on Lyme Disease

Every year, researchers are discovering new strains of bacteria or viruses that cause disease and are carried by ticks.  Currently, the Centers for Disease Control lists 14 illnesses linked to tick-borne bacteria.

In 2013, the CDC modified its estimate of annual Lyme cases ten fold, from 30,000 to 300,000. Most Lyme specialists believe that the higher number is a low estimate.

ILADS, or the International Lyme and Associated Diseases Society, sponsors research, conferences, and the dissemination of information about Lyme Disease.  Lyme Disease has caused a major split in the field of infectious disease medicine and ILADS is an outgrowth of that split.