New York Times’ Story on Lyme Misses the Bull’s Eye
July 2, 2019
By Judy Stone, Infectious Disease Specialist
This bull’s eye rash, characteristic of Lyme disease, may be seen in fewer than half of patients. GETTY
An article appeared in this week’s New York Times, “My Son Got Lyme Disease. He’s Totally Fine. Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.” While I am delighted that author Apoorva Mandavilli’s son had a good outcome, I feel a need to respond to aspects of the story that I, a Board Certified Infectious Diseases physician who lives in a Lyme endemic area and has had Lyme, found misleading and disturbing.
Neither the author’s experience—nor that of the pediatrician she quotes as “never had a complication from Lyme—matches mine. Mandavilli says, “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.”
I understand that there are a spectrum of patients with Lyme.
I’ve cared for a number of patients with Lyme disease hospitalized with serious complications, including arrhythmias, arthritis, and neurologic symptoms. Occasionally, patients get pacemakers needlessly because the cardiologist does not consider Lyme. Pacemakers are not without their own complications, including life-threatening heart infections.
At the other end of the spectrum, I’ve had some patients, even without confirmatory lab results, who demanded months of IV antibiotics for their symptoms, which may or may not have been due to Lyme. As I would not do, presumably they went to someone else who considered themselves more “Lyme literate” than I, and who went along.
And I had one memorable patient, treated for months with IV ceftriaxone, for what proved to be ALS (amyotrophic lateral sclerosis), a fatal neurologic disease. A different neurologist chided me for taking away the patient’s hope.
Mandavilli, according to her responses to some comments on Twitter, was aiming to reassure parents that most Lyme was benign.
Antibiotics for Lyme
While I likely erred on the side of treating Lyme too conservatively, not wanting to cause more harm with antibiotics, my thinking has evolved some over time. We are learning more about persisting states of Borrelia, the bacteria that causes Lyme. When I spoke a few years ago with Dr. Sam Donta, he had some interesting, thought-provoking hypotheses. He also treated his patients with months of oral antibiotics and Plaquenil, focusing on the intracellular persister bacteria.
Some of Mandavilli’s points were valid, but still off target. The author notes she gave her son a month of doxycycline plus an antacid. I hope that she was careful with the timing, as antacids containing magnesium, aluminum, or calcium make the antibiotic less effective. Recommendations are to take the doxycycline “2 hours before or 6 hours after taking antacids, calcium supplements, and laxatives containing magnesium.” Similarly, vitamin products that contain iron need to be staggered with the antibiotic dosing.
Mandavilli correctly notes that “monthlong course of antibiotics can disrupt the gut microbiome” but she adds “and cause temporary stomach problems.” I guess she’s not seen people lose their colons due to C. difficile colitis, or die of sepsis from that colitis as I have.
My biggest criticisms relate to diagnoses and prevention. Lyme may be readily treated if caught early.
But her child’s physicians missed even thinking of the diagnosis, even though she was in an endemic area and son Akash had a new arthritis of his knee, a classic symptom of Lyme. Lyme should have been a much higher consideration than “juvenile arthritis or any of a long list of autoimmune disorders” his physicians entertained.
Reader Daphne commented in the Times, “The disease IS easily treatable in it’s early stages. The problem is that it IS NOT easily diagnosed. The basis of questioning in the article should not be “What are people so worried about?” Rather, it should be, “How can we assure early detection of Lyme is the norm for everyone?”
With an estimated 300,000 new cases of Lyme each year in the US, and the Tick-Borne Disease Working Group 2018 reporting that “10 to 20% of patients suffer from persistent symptoms, which for some are chronic and disabling,” it is important not to trivialize the disease.
Lack of accurate diagnostic tests
One of the biggest problems with Lyme, besides our lack of knowledge about it, is that we don’t even have good definitions of disease nor do we have any decent diagnostic tests. No definitive biomarker exists either for B. burgdorferi or for PTLDS (post-treatment Lyme disease syndrome).
This difficulty in getting a diagnosis is not unique to Lyme. It is common for patients (especially women) with vague symptoms such as fatigue, difficulty concentrating, or joint pain to go years without a diagnosis. Too many patients have rare diseases or autoimmune overlap diseases and it often takes five years and visits to an average of 7.3 physicians to make a diagnosis. Even for something that should have been fairly straightforward, it took me more than 10 physicians over a long time to have a torn cartilage in my wrist diagnosed—because it is an relatively unusual problem and because I was a woman, doctors refused to take my history seriously.
Diagnosing Lyme is difficult unless the symptoms are “classic.” It’s even worse for PTLDS, although John Aucott and Johns Hopkins researchers are beginning to tease out differences from controls. Lorraine Johnson, CEO of LymeDisease.org argues that the term PTLDS should be eliminated, as it is based on fulfilling the surveillance case definition of the CDC, and should not be used clinically. Lyme tests with the two-tier testing are antiquated and miss too many patients. The tests are generally negative in the first month after a bite, as they are based on the patient developing antibodies to infection. A corollary is that if the patient has taken antibiotics for the bite, they may not develop antibodies at all. The two-tier testing is quite specific, meaning it is unlikely that the patient will have a falsely positive test—at the expense of overlooking many.
Not only did Mandavilli miss her mark in terms of being reassuring, I believe she did a huge disservice by minimizing Lyme disease and, by extension, the need for rigorous preventative measures and personal protection. I stress that aspect in my writing and patient care, since I’ve seen such serious complications. If parents think Lyme is a trivial illness, they are unlikely to go to the trouble of treating clothes, shoes and socks with permethrin, using insect repellents, or doing meticulous tick checks after outdoor adventures. This is critically important. Tiny, deer ticks transmit not only Lyme, but a host of other nasty infections, including ehrlichiosis, anaplasmosis, babesiosis, and Powassan virus. The latter can be deadly even if the tick has only been feeding for less than an hour. I say this not for scare-mongering, but to counter the impression the NYTimes article likely left many that tick bites are no big deal. They failed their millions of readers with this post.
Be active, go outdoors, but take precautions would be a safer message.
A fairly balanced article by an infectious disease specialist. I think I’m going to faint….
Please note: “While I likely erred on the side of treating Lyme too conservatively…”
I would hate to be in a doctor’s shoes when the science finally catches up to the times. I think there’s going to be a lot of regret & guilt.
Regarding getting the EM rash, the percentages vary wildly from 25%-80%, but hardly a symptom that should be used as any sort of standard for anything. If you have it, you have Lyme, but even if you don’t have it, you can still have Lyme: https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/