When I mentioned to various people last December that my 9-year-old son, Akash, had Lyme disease, many immediately told me horror stories. A parent at the school bus stop told me about a family friend in her 20s who has never recovered from her infection. A co-worker at the neighborhood co-op told me that his father-in-law has had seizures ever since his diagnosis. Even a fellow science journalist told me she knows some people never recover.
“Everybody, I tell you everybody, has an aunt or an uncle or a friend who got Lyme disease and is now chronically disabled,” said Dr. Sunil Sood, a pediatric infectious disease specialist at Northwell Health, Cohen Children’s Medical Center in Long Island, N.Y. “Unfortunately, it’s become ingrained that it’s a chronic condition — and there could be nothing further from the truth.”
As we discovered in the few weeks of his diagnosis and treatment, many people view Lyme — wrongly — as a debilitating, chronic illness instead of what it is: An easily treated infection with no long-term consequences for children, or even the vast majority of adults.
The hardest part of our experience was getting Akash diagnosed — more on that later. But once we knew he had Lyme disease, he took a four-week course of doxycycline, plus an antacid and a probiotic to minimize the side effects of the antibiotics. And that was it.
This is not to trivialize Lyme disease: Every year there are an estimated 300,000 cases, and about one in four of those are children. These numbers have been steadily rising. Plus a monthlong course of antibiotics can disrupt the gut microbiome and cause temporary stomach problems.
Still, for most, the disease is easily treated and cured, as many studies have shown, and parents have no cause for panic.
Parents of children with certain symptoms are often anxious about a Lyme disease diagnosis, said Dr. Eugene Shapiro, professor of pediatrics and of epidemiology at Yale. But “when it turns out to be Lyme disease, we go to the parents and say, ‘Great news, it’s Lyme disease, that’s the best thing it could be,’” he said. “It’s baloney that you can’t cure Lyme disease, it’s eminently curable.”
Some of the symptoms of Lyme disease — joint pain, fatigue — are nebulous, but others are distinct: About 80 percent of people develop a classic spreading rash, known as erythema migrans, in the first week or two after the tick bite. Among those who don’t have this rash, or miss it because it’s somewhere inconspicuous, most go on to develop Lyme arthritis — typically a single warm swollen knee. (Others typically get better on their own and may never know they had Lyme disease at all.) Some may develop facial palsy or, in rare cases, meningitis.
The recommended treatment, a monthlong course of antibiotics, is effective regardless of the stage. “We’ve never had a complication from Lyme that would be of any consequence,” said Dr. Katerina Silverblatt, the pediatrician at Heights Pediatrics in Brooklyn who eventually diagnosed it in my son.
If Lyme disease is so easily treated, why do so many people report chronic symptoms?
Dr. Shapiro said a small number of people may be especially sensitive to the lingering effects of the Lyme infection, even after the bacteria are long gone. But he said most people who report chronic problems were most likely wrongly diagnosed with Lyme disease when they had something else to begin with.
There is a blood test for Lyme disease, but its use and interpretation require some sophistication. The blood test detects antibodies the body makes against Lyme bacteria, but these antibodies are not detectable until about four weeks after the bite — and two to three weeks after the rash typically appears. So if doctors order the test when they see the rash, the test would deliver a “false negative” even when there is an infection.
The test picks up the antibodies if the person has ever before been exposed to the bacteria — which, in areas where Lyme is prevalent, is not uncommon. The Lyme test is also not specific and can react to other antibodies in the body. Either of these scenarios can deliver a “false positive” test result, suggesting an active infection where there is none.
For these reasons, the test has to be used in conjunction with symptoms in order to make a clear diagnosis, Dr. Shapiro said.
Some people who have unexplained pain or fatigue may latch on to Lyme disease as a possible explanation after getting an inaccurate diagnosis from a doctor who misinterprets the test. The doctor may then treat them for Lyme disease. “And guess what? They’re not cured — because it wasn’t Lyme disease in the first place,” Dr. Shapiro said.
Those patients may continue to take antibiotics for months in the hopes of getting better, but that long-term treatment is harmful, he said. “It’s costly, and people don’t get treated for what they really have.”
In places where Lyme disease is prevalent, pediatricians often diagnose based on the symptoms alone and use the test for confirmation.
That was true in our son’s case, too — but only after we had a bit of a medical (mis) adventure.
Akash had complained a few times since the summer about an ache in his legs, which we attributed to his gait (he wears out one side of his shoes) or growth pains or to his twice-weekly squash lessons. His complaints were neither frequent nor forceful enough to cause us worry. When he woke up that December morning with a swollen knee, we didn’t connect it to those earlier pains. He couldn’t remember a fall or injury, so the swelling seemed sudden and mysterious.
We saw a couple of doctors, who ordered various X-rays and scans. When an M.R.I. showed inflammation in Akash’s knee and ankle, the orthopedist we saw called to say it could be juvenile arthritis or any of a long list of autoimmune or inflammatory disorders.
It wasn’t until my husband happened to narrate the saga to Dr. Silverblatt, who takes squash lessons with him, that she noted that only one of his knees was swollen. She asked whether we go out to Long Island. We do; we frequently go to the North Fork of Long Island, where ticks are bountiful. Finally she heard that Akash couldn’t recall any fall or injury. “It sounds like it could be Lyme disease,” she told my husband.
Within two days, we had the results from Akash’s Lyme test, and a prescription for the antibiotics.
“For me, it wasn’t that bad because it was a small little pill to get rid of Lyme disease,” Akash told me. “It took only four weeks, I’m already done. I think other people shouldn’t be worried because it wasn’t that big of a deal.”
Apoorva Mandavilli and her family live in Brooklyn.
