TOUCHED BY LYME: Singing from the IDSA Lyme hymnal
Imagine the following scenario: A woman finds a lump in her breast, gets diagnosed and treated for early breast cancer—and recovers beautifully. She goes on to live a long and healthy life.
Here’s another scenario. A different woman develops breast cancer. She requires a long and difficult treatment regimen. It’s not only an ordeal for her, but is extremely hard on her entire family. Eventually, she too recovers, but the family still reels emotionally from the whole experience.
And finally, this: A third woman gets breast cancer. After a long medical struggle, sadly, she dies from the condition. Her family and friends are devastated.
What would you think if the first woman then wrote an article for a leading national newspaper saying that breast cancer is no big deal? After all, she had it and she got better. So why do people whine about it? Why such concern about an illness that is easily treated and cured?
I think many readers would take offense at that. Especially anyone with a family member who has had breast cancer, whatever the outcome.
That’s how lots of parents of children with Lyme disease feel after reading the following article in the New York Times: My Son Got Lyme Disease. He’s Totally Fine.
In the article, journalist Apoorva Mandavilli recounts how her 9-year-old son woke up one morning in their Brooklyn home with a swollen knee. (A symptom that often goes along with Lyme disease, especially in children.)
“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.”
The importance of playing squash
Apparently, none of these physicians even thought to consider Lyme disease as a diagnosis. In fact, the topic of Lyme only came up—eventually—while her husband played squash with their pediatrician.
(Is this Mandavilli’s advice? If you live in a Lyme-endemic area and your child has a symptom that’s highly associated with Lyme disease —make sure to play sports with the kid’s doctor, because otherwise no one will think of it.)
The failure of doctors to suspect Lyme when other signs may point to it, is precisely when the health of so many children gets derailed. These kids who actually have Lyme and/or other tick-borne diseases instead get sent down the false pathways of juvenile arthritis or other off-target diagnoses. Because they are never properly evaluated, they don’t get rightly diagnosed and treated. As a result, many suffer a variety of ills for YEARS.
“Once we knew he had Lyme disease,” Mandavilli writes, “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.”
She further states:
“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.”
To which I say to Ms. Mandavilli: How fortunate for you and your family that your son responded well to a short course of antibiotics. But HOW DARE YOU presume that because your child lucked out in this case, Lyme is therefore an “easily treated infection with no long-term consequences for children”?
Back in the mid-2000s, my then-teenage daughter spent three years in a wheelchair due to Lyme disease. Believe me, the “long-term consequences” lasted far beyond those three years. And I know of many children—and adults—who are wheelchair/bedbound for much longer than that. Some eventually recover and some don’t.
Furthermore, I regularly hear from families whose Lyme-infected children suffer intense pain, fatigue, gastrointestinal upsets, learning disabilities, seizures, behavioral issues and/or psychiatric problems. The effects on all members of the family—not just the ones with Lyme—are far-reaching.
In a tragic story that still reverberates through the Lyme community, in 2013, a New York state teenager named Joseph Elone returned from summer camp with what seemed like the flu. Not long after he tested negative on the standard test for Lyme disease, he suddenly collapsed outside his family’s home and died.
An autopsy showed Lyme spirochetes in his liver, heart, lungs and brain. The official cause of death was Lyme carditis—a condition which interferes with electrical signals in the heart. (Click here for a comprehensive account of Joseph’s story.)
Ms. Mandavilli, why don’t you tell the Elone family that Lyme is an “easily treated infection with no long-term consequences for children”?
In her article, Mandavilli quotes Dr. Eugene Shapiro, who states: “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’…It’s baloney that you can’t cure Lyme disease, it’s eminently curable.”
Dr. Shapiro is well known to the Lyme community. In fact, in recent weeks, more than 24,000 people have signed a petition to have him removed from the federal Tick-Borne Disease Working Group. He has unacceptable financial conflicts of interest, and a long record of working against the benefit of patients. (Click here for more about why we oppose him and to sign the petition.)
I’m disappointed that someone who lists her occupation as “science journalist” paints such a narrow picture in this article. She quotes three doctors who all sing from the IDSA’s Lyme hymnal, and then extrapolates that the experience of all families should match her own.
Her family may have won the lottery this time. But that fact shouldn’t obscure the very real suffering of vast numbers of children and adults with Lyme disease–and the long-term consequences it can bring.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.