Lack of reliable test impeding efforts to curb Lyme disease: Valley Views
Here are three things to know about ticks and what to do about them. Video by Jordan Fenster/Poughkeepsie Journal Wochit
In the mid-1800s, an observant doctor in Vienna noticed that many more newborns died of childbed fever on one hospital ward than another. He discovered something that would make medical history.
On the high-mortality ward, doctors in training went straight from working on fetid cadavers to delivering babies — without washing their hands. Today, the deadly practice would be unthinkable. But Ignaz Semmelweis was ridiculed for linking poor hygiene to infant death, and he died in an asylum, a broken man.
Medicine sometimes clings fiercely, even in the face of convincing evidence, to old ideas. It did in Semmelweis’ time. It is doing this today on a sometimes life-altering infection that affects many Hudson Valley residents: Lyme disease.
ATTEND FORUM: Journal to host Lyme forum at Marist College
I began writing about this common tick-borne disease in 2012, in an investigative series for the Poughkeepsie Journal. I found an illness that was far more complex, misunderstood and controversial than I ever imagined.
At its center was a patient population that was clamoring for care, including people who had been to 10 or 20 doctors with disabling symptoms of late-stage Lyme disease. They were told they were depressed, anxious, or had rheumatoid arthritis or fibromyalgia. One doctor herself said she had been misdiagnosed with multiple sclerosis — as had other patients — but got better on antibiotics for Lyme disease.
At the same time, I found that the few doctors willing to treat these patients often faced the terrifying prospect of investigation by state licensing boards. Their offense: using alternative tests to diagnose Lyme disease and, moreover, treating them with longer-term antibiotics, normally considered among the safest drugs there are.
The guidelines that dictate Lyme disease care in America and, by extension, the world have long framed the disease simplistically and dogmatically: It is easy to diagnose with the only test approved for use, the guidelines assert, and easy to cure with four weeks or less of antibiotics.
The reality of Lyme disease, which may be complicated by other tick-borne infections, is far more nuanced. The central issue is the lack of a test to reliably diagnose it.
Time and again since its adoption in 1994, the only approved test for Lyme disease has been shown to miss many cases, especially early in the disease — when it fails more than half the time. Doctors instead are told to rely on the Lyme rash to diagnose — although it appears in, at best, 70 percent of cases, takes many forms, and may not be seen at all.
For those who fail the test or miss the rash, the alternative is to let the organism move throughout the body, then test later — a dicey prospect in a disease that becomes harder to treat as it progresses. Even then, the test misses some difficult neurological cases.
In 2016, European scientists analyzed 78 studies on whether Lyme tests worked. “The data in this review,” they concluded, “do not provide sufficient evidence to make inferences about the value of the tests for clinical practice.” Translated: We don’t know if the tests work when a doctor uses them on a patient.For treatment, meantime, doctors have repeatedly been told that short-course antibiotics almost always kills the infection. But some 20 published papers since 2012 have demonstrated the failure of front-line antibiotics like doxycycline to kill what is called “persister” cells in infected monkeys, mice and test tubes. Ironically, these studies validate science from as long as the 1990s that showed the Lyme spirochete surviving in dogs and, later, other animals treated for Lyme disease. Yet this science has struggled to break through against entrenched dogma.
Dr. Kim Lewis, who led a study at Northeastern University, put it this way: “Interestingly, when you show up at the doctor’s office, nobody tells you that you have a 10 percent probability that something very unpleasant is going to happen to you, and maybe we won’t have any remedy for that. We’ll just give you some doxycycline and you’ll be fine. A lot of people are not.”
Ticks are spreading rapidly in a warming climate and a world of fragmented forests and diminished diversity. Here in the Hudson Valley, they wait patiently, billions of them, on a bit of roadside brush, in yards, at the edges of ball fields, along nature trails and on dog walks.
Like Semmelweis, a new cadre of Lyme researchers is offering a possible explanation. These scientists are suggesting why thousands of patients annually remain sick when ticks bite, even when they are treated exactly as guidelines dictate. Will medicine listen?
Mary Beth Pfeiffer, a former investigative writer for the Poughkeepsie Journal, is author of Lyme: "The First Epidemic of Climate Change," which will be published April 17 by Island Press, Washington, D.C. She will be part of the Poughkeepsie Journal's forum on Lyme held that night at Marist College. The event is free and open to the public. Registration is required here: https://tickets.poughkeepsiejournal.com/e/lyme.