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.
So glad your son is better. My nephew had a similar dreadful experience. Once they found a doctor who recognized the problem, he had to go to the hospital daily for intravenous antibiotics for 30 days. It was a grueling treatment, but he is fine now.
Glad to hear that your nephew is better, Donna. I had always liked our doctor and could not understand why he wasn’t more curious about the lengthy fever, or the recurring infections. Unfortunately, I think doctors are so busy these days that they often focus on the immediate concerns — e.g. an infected finger — and miss the bigger picture and patterns that the family sees. The fact that patients often end up seeing a different doctor at each appointment (especially if they are urgent appointments) doesn’t help either.
I came over from Susie’s place today, but I’ve been by before. Summer officially begins today – 5:51AM locally for me… ticks and diseases are messy creatures – especially dangerous when you are outdoors a lot. My son is heading to the Boundary Waters for eight days this summer with his scout troop and we’ll be doing a tick check when he gets home – thanks. I hope your son continues to get better. Have a wonderful summer!
Thanks for stopping by. I hope your son has a wonderful trip, with no ticks, although the cold winters up there probably keep down the population (Tickwise, I always feel pretty safe in New England’s mountains because winter lasts well into April). I would love to go to the Boundary Waters some day although many years ago, I was camping by a lake in Minnesota and the mosquitos were voracious!
I came over from Susie’s party and I’m glad I did. Your post reads like a thriller. It’s just so frustrating when the patient (or his mother) has to be the one to diagnose, just so the medical community will do their job. My heart goes out to your son. Hope his health continues to improve.
Thanks for stopping by, Barb. We are so thankful that my son is doing so so much better. He ran a 5K last night and, although he is not a natural runner, I think he surprised himself when he shaved 2 minutes off of his previous race time. I’m so happy that he is outpacing me by far!
This must have been so stressful! My mom was bit by a tick and got sick back in the 1940’s. They hospitalized her. Now she looks back and thinks the bite caused the illness.
I’m so glad you followed your instinct and found a good doctor! More important than that, I’m relieved he’s feeling better!
I just discovered you are using a paid WordPress site. It may use a different dashboard than mine. I would go to support or the forums to figure out the title problem.
Thanks for coming to the party! Have fun mingling with the guests!
Thanks for a great party, Susie.
One theory about Lyme Disease is that it was very common in colonial times, but died back because the forests in New England (and elsewhere) were cut back for farm and pasture. Now that the forest has grown back, ticks — and their diseases — have proliferated. It’s likely that these tick-borne illnesses have always been around — as your mother’s case illustrates.
I came over from Susies and it is nice to hear you son is doing better. I used to live in Connecticut and Lyme was a real worry. Best wishes to you,
Thanks for sharing your story, Dianne. We went through something similar with my son when he was in college. He had always been an incredibly healthy kid. But in the spring of his junior year of college, he was so ill I had to drive two hours to his school to get him because he didn’t feel capable of driving (this was after several visits to the college infirmary and local hospital’s ER). Long story short, he was sick off and on, and extremely tired most of the time, for the next three years. Our regular doctor was great but some of the specialists we ended up going to were not. One eye doctor outright called him a hypochondriac after meeting with him for 10 minutes. I almost slugged the guy.
Our family physician finally diagnosed it as chronic fatigue syndrome, which can be related to mononucleosis (I had been exposed to mono right before he started having symptoms). My opinion of the medical profession went way down after that experience.
Some of your son’s symptoms sound pretty scary. So glad you persisted and finally got a diagnosis and treatment that worked. (btw, Susie sent me.)
I’m glad your doc stuck by your son until getting a diagnosis. This winter I closely followed a case in Connecticut/Massachusetts in which the state (Mass) eventually took custody of a teenager suffering from a mysterious illness. They charged the parents with medical child abuse. It was chilling to read about the case. One highly regarded specialist said that the girl had a rare condition called mitochondrial disease and a specialist at another hospital (at world famous Children’s Hospital) said she had “somataform disorder”, a so-called “psychological” disorder that manifests with physical symptoms. Thankfully, the state returned custody to the parents last week.
Thanks for stopping by, and I’ll be visiting you too!
Yikes, that is a scary situation, and as a retired psychotherapist, I hate the diagnosis of somatoform disorder (It’s actually a whole category of disorders). Although it does accurately apply to some patients, all too often it is a catch-all for ‘the doctor can’t figure out what’s wrong so it must be in the patient’s head.’
You’ve inspired me to write a post in August (after we get back from our vacation) about our experience with our son’s illness. Every little bit helps in terms of raising consciousness about these hard-to-diagnose illnesses. (I blog at http://misteriopress.com )
Wow! How scary that must have been. So glad your son is doing much better now. (Susie sent me.)
Thanks for visiting, Kitt!
So glad he’s doing better. It’s been a long road for me, but once you know what you’re fighting, things start to look up. I gulped when your PC said it was psychological- it’s like IBS (. I’m basically stumped). Happy travels!
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