Lessons From Lyme Disease: Six Reasons The CDC’s COVID-19 Failure Was Predictable

  Lyme disease experts are not surprised by the failure of the U.S. Centers for Disease Control to ensure quick diagnosis of COVID-19. For them, the agency’s long-endorsement of a broken test for Lyme disease, afflicting more than 300,000 Americans annually, is a sorry — but telling — precedent.

   Each year, the ranks grow of people whose Lyme disease was diagnosed late simply because their test result was wrong. Perhaps a million Americans suffer from lingering Lyme symptoms, many because their test said “negative,” while their symptoms said otherwise.

  Nonetheless, the agency has refused to retire an archaic test, arbitrarily crafted at a conference in Dearborn, Mich. in 1994, even as studies and meta-analyses documented the failure of the test and the toll of disability grew.

   “I wish I could say I’m surprised that CDC has so devastatingly and arrogantly bungled the COVID-19 outbreak,” said Dana Parish, a leading Lyme reformer and co-author of a coming book, “Chronic,” that is harshly critical of the CDC. The agency has not only upheld a flawed test, she said, but “aggressively and disingenuously discredited better tests.”

    The parallels between COVID and Lyme are not exact. But here, in a nutshell, are six ways the agency has failed Lyme patients, lapses that might help explain its coronavirus missteps:

·     The agency defined Lyme disease by the test rather than the symptoms. Doctors have been told: Trust the Lyme test or the rash. Lacking those, they have been discouraged from diagnosing by symptoms — a summer flu, joint pain, fever and malaise — even though the test fails and the variable Lyme rash is absent or unseen. A CDC spokesperson summed it up, when I was writing about a 17-year-old boy who had tested negative, went untreated, and died after Lyme disease infected his heart. The rash, the spokesperson said, “is the only manifestation … sufficiently distinctive to allow clinical diagnosis in the absence of laboratory confirmation.” Translation: No rash, no positive test, no treatment.

·     CDC limited who could get the test. Potential COVID patients had initially been told they must have visited another foreign country or been exposed to another infected person to be tested. Similarly, Lyme disease has been strictly defined as a disease of endemic, or high-incidence, states in the Northeast and Midwest, where a rash or positive test is diagnostic. But ticks thrive in areas of California and many other states, where the bar to diagnosis is exceedingly high, even if a wise doctor suspects it. Residents must have knowledge of a tick-bite, a positive test and a rash — three conditions that make the chances of treatment tragically low.

·     CDC has defended an indefensible test. We all know that the longer you’re sick, the more difficult the recovery. Yet the Lyme test is built on a single faulty premise: Wait. Antibodies take time to produce. Allow the Lyme disease spirochete to disseminate. Then test again. The agency’s point man on Lyme disease, Charles Ben Beard, recently told a federal panel: “The diagnostic test is reliable in terms of it telling you what you expect to hear.” Except that studies show it’s not.

·     CDC has allowed outside influences to color its decisions. As the nation’s chief policy-maker on Lyme disease, CDC has let its scientists publish with key physician-researchers who have built careers on a view of Lyme disease as easy to diagnose and treat. This includes providing advice on papers dismissing alternative tests and upholding one set of outdated treatment guidelines while ignoring another. Emerging science suggests that the Lyme bug can persist after treatment, but the agency has been slow to embrace it.

·     The agency has failed to facilitate a new test, even as recognition of the test’s failure grows. Instead, it has rejected other tests, some from laboratories that meet stringent accrediting standards. One of the original crafters of the diagnostic, which is actually two sequential tests, Raymond Dattwyler, told me this for my book: “Twenty years ago, I would’ve said they’re fine. Now I say, ‘oh s**t, we were wrong.’ It doesn’t look as good as we thought it was.”

·     The CDC has minimized the damage to patients. The medical literature is rife with references to people who stay sick after being treated early and exactly as prevailing Lyme guidelines recommend. Some 10 to 20 percent of early treated sufferers stay sick for at least a year, 5 percent for 15 years on average. Now consider the fate of those treated late. But instead of acknowledging what a BMC Public Health study called “incapacitating fatigue, pain and neurocognitive dysfunction” after treatment, the agency has minimized patient symptoms. In 2016, after at least five years of saying that up to 20 percent of patients stayed sick, it changed its website to say it was a “small percentage” of patients. The CDC later dropped any reference to population size.

   Michael Cook is a British researcher who found that the Lyme disease test produces 500 times more false negatives than the HIV test. “The name Centers for Disease Control and Prevention does not reflect the strategies and tactics of this organization,” he wrote in an email, questioning whether the agency was intent on creating its own COVID test from which it would profit.  

  “CDC has failed us all,” Steven Phillips, a Lyme disease specialist and Parish’s co-author, told me. “Over the past week, I've been hearing from physician after physician, telling me that now they see what I've been saying all along for decades is true. Now they realize that CDC dogma regarding Lyme and other vector-borne infections is a house of cards.”

Some diseases can, and, as with Lyme disease, should be diagnosed when symptoms strongly suggest illness. Nonetheless, said Brown University researcher Allison DeLong, “it is impossible to understate the value and importance of having widespread access to reliable tests for all infectious diseases. ... The hope for a vaccine (for Lyme or COVID-19) is moot if you can't validate one with a reliable test.”