Bay Area Lyme Foundation Responds to NY Times Story

We are thrilled for the Mandavilli family, who shared that their son responded well to treatment for Lyme disease in The New York Times story My Son Got Lyme Disease. He’s Totally Fine. This is not the case for everyone, and it is irresponsible, and scientifically inaccurate, to blanketly define Lyme, and other tick-borne diseases, as “easily treated”. This one patient’s experience can be countered by hundreds of other patients whose disease has brought their lives to a halt. It does a huge disservice to patients whose families read stories like this and question the patient’s symptoms, and whose community doctors see reports like this and refuse much-needed treatment. The joy of the Mandavilli family should be heralded as a success but not an example.

The CDC has reported deaths due to Lyme disease beginning as early as 2013, with most caused by Lyme carditis, a condition in which the bacteria invades the heart. And, the ability of this bacteria to invade other organs, including the brain, and cause paralysis is well-documented. Several celebrities including Alec Baldwin, Avril Lavigne, Yolanda Hadid and Kelly Osborne have by their own accounts believed that they were near death due to Lyme disease. Clearly, the singular experience of the Mandavilli family is not broadly representative of what every person with Lyme experiences.

There are more than a dozen highly-respected peer-review studies performed at renowned institutions, as well as Congressional testimony, that demonstrate the ability of the bacteria that causes Lyme disease to remain active despite antibiotic treatment. A number of the citations are available here.

In fact, a report from the HHS Tick-Borne Disease Working Group to Congress in 2018 notes, “A hallmark of the Lyme disease-causing bacterium, B. burgdorferi, is its ability to efficiently transmit from feeding Ixodes species ticks to vertebrates, disseminate throughout the body, and establish long-term, persistent infection in the absence, and sometimes in spite of, antibiotic treatment. This persistent infection is maintained even when the infected mammal has a complete, functional immune system.”

While it is fair to say that Lyme disease has different outcomes for different people, it is clearly irresponsible—and scientifically inaccurate—to represent the Mandavilli experience as demonstrative that Lyme is easy to treat for everyone. This is not only a slap in the face to all the patients who deal with the symptoms of persistent disease, but also deters progress toward finding better treatments for these patients.

Further, Mandavilli herself highlights the challenges of diagnosis, including that her son was misdiagnosed with numerous other ailments by several physicians until her husband happened to be taking squash lessons with their son’s pediatrician.  She also points out that “false negatives” are not uncommon when there is an infection, which oftentimes prevents patients from getting prompt treatment. How much more difficult might it have been to treat her son’s Lyme if they weren’t in a social situation with their pediatrician at just the right time?

We need to take Lyme disease and its impact seriously in order to make Lyme disease easy to diagnose and simple to cure—it is currently neither.

2 Comments on “One Success Hurts Thousands Who Are Suffering

  1. Yes her son got “better” and is “fine” as it often is, after the initial treatment, let’s see what mom says in 10 years when her son has a relapse because he had persisters hiding in his cns that they didn’t know about, and he ends up in a wheechair and mom keeps denying it’s Lyme as her son get treated with very expensive ms drugs that will only make her son worse in the long run…. let the countdown begin….

    1. Melissa,
      I hope you are wrong about this and I know you don’t wish any ill upon the boy or his family. Sadly, this misleading article is just fodder for people like Shapiro and his insurance cronies to deny benefits and discount seriously ill people. For thousands of patients, the countdown has already begun.

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