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The peril of chronic Lyme disease

The adult deer tick, Ixodes scapularis, often bites

The adult deer tick, Ixodes scapularis, often bites humans and is the primary vector of Lyme disease. Credit: U.S. Department of Agriculture / Scott Bauer

Nev Zubcevik is a rare doctor: She runs a clinic that treats late-stage Lyme disease. It has 100 patients waiting to get in and no openings until March of 2018.

“Between yesterday and today,” she told me recently, “I got six texts about children who are in need of immediate attention.”

The plight of Zubcevik’s clinic at Spaulding Hospital in Boston is played out around the nation and in other countries, where physicians who specialize in Lyme disease are overwhelmed. Why? Because infectious disease doctors will not care for a condition that is spurned by mainstream medicine: chronic Lyme disease. We cannot help you, patients are told. See someone else.

New York has the highest number of Lyme disease cases nationwide, and scientists forecast a record year for ticks in the Northeast. Of more than 300,000 Americans who contract Lyme disease every year, some 10 to 20 percent remain ill for months and sometimes years. The U.S. Centers for Disease Control and Prevention calls this a “post-treatment syndrome,” rather than a condition involving live pathogens, in part because there is no approved test to determine active infection.

Whatever is causing these patients’ pain — syndrome or infection — the shortage of care is destined to get much worse. That is courtesy of the CDC itself, which recently reported the unfortunate and unrepresentative outcomes of five patients who received intravenous antibiotic and immune-therapy treatment for Lyme disease. The agency warned doctors not to provide the only treatment that works for many patients, while offering them nothing better.

The CDC, relying on principles developed by the Infectious Diseases Society of America, maintains that short courses of antibiotics, generally two to four weeks, eradicate the disease. But at the same time, it ignores science from American universities that documents re-emergence and persistence of Lyme spirochetes after treatment with antibiotics — suggesting it can be chronic. Some research suggests that common front-line antibiotics ought to be abandoned for stronger ones.

The CDC reported the cases of five patients who had received long-term treatment and suffered infections from intravenous lines. They included a woman in her 30s who died from septic shock and an adolescent girl who suffered a serious infection, normally acquired in hospitals. Two patients developed spinal infections, and a third had abdominal cramping and diarrhea from a debilitating Clostridium difficile infection.

In all, there were five serious infections over three years, indicating real but small risk. A 2010 study of 200 Lyme patients on long-term IV antibiotics — on average 118 days — found just one confirmed infection and six suspected. The CDC provides scant evidence of risk of long-term IV antibiotic treatment on its website, citing six scientific articles in 21 years, including four that cover single cases.

When I asked the CDC about the new reports, which were solicited from doctors, it said in a statement it had “heard of additional cases” beyond the five but did not include them; that “anecdotal reports” were “unfortunately common”; and that “no systematic efforts” had heretofore been made to collect them. This effort was hardly systematic. The question that the CDC cannot answer is how common bad outcomes are, or more important, good ones, either. On that side, no one is looking.

Scientific evidence is mounting that the Lyme spirochete can survive short-course antibiotic treatment in animals and sometimes people. Some 20 scientific papers since 2012 have pointed in a similar direction.

CDC’s unwillingness to re-evaluate Lyme disease care leaves patients with few options in the United States and other countries that follow the American model of care. It’s time to stop asking what Lyme doctors are doing wrong, and, just maybe, ask what they are doing right.

Mary Beth Pfeiffer, an investigative journalist, is writing a book on the global spread of tick-borne disease.