In his interview with Terry Gross on Fresh Air, journalist Michael Specter says that patients are desperate and that “chronic Lyme” is “more comforting” for them to grab onto than a vague, incurable diagnosis of post-treatment Lyme disease, the preferred IDSA terminology – and a concept that is “recognized,” he points out. He thinks he is being sympathetic and doesn’t seem to realize how condescending and very offensive this sounds to Lyme patients.

By Phyllis Mervine

In his interview with Terry Gross on Fresh Air, journalist Michael Specter says that patients are desperate and that “chronic Lyme” is “more comforting” for them to grab onto than a vague, incurable diagnosis of post-treatment Lyme disease, the preferred IDSA terminology – and a concept that is “recognized,” he points out.  He thinks he is being sympathetic and doesn’t seem to realize how condescending and very offensive this sounds to Lyme patients. He has no understanding of how long people have been sick before being diagnosed (our survey showed an average of four years), getting the runaround from doctors who tell them there’s nothing wrong or it’s all in their heads.

It’s actually not comforting to be diagnosed with chronic Lyme unless the treatment works. Luckily, for many, it does, shown both by NIH studies (Fallon, 2007)  and thousands of anecdotal reports from patients, captured in our survey.

But Specter thinks more treatment won’t help these patients, citing as evidence four NIH-funded clinical trials. He concedes that two showed some benefit, but it was short-term, and there is a downside to long-term treatment. He reminds us that one person actually died. No suggestion about the downside of not treating or letting patients and their doctors make that judgment call. We let cancer patients do that, don’t we?

Still, he understands why people want to try antibiotics. Patients want to find something, he said. Maybe he would, too, if he had zero quality of life and no other effective options. He mentions that some turn to alternatives like gluten-free diets and Rife machines, like the young woman featured in his New Yorker story. But, if they feel better he attributes it to “placebo effect,” claiming there is no scientific evidence that the methods work.

In any case patients don’t care about statistics, they just want to feel better, he said. This is condescending and offensive, too, and he goes on, “We like recommendations to be scientifically based.” Implying patients don’t, I suppose. He thinks it’s damaging to recommend dramatic life changes when there’s no evidence to back it up but apparently it’s ok to withhold treatment because the tests aren’t good enough. Absence of proof is proof of absence in his world.

Again, Specter is approaching the subject with blinders on. When the results of  Klempner’s clinical trial were published, NIH and news media immediately blared, “Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment.” .The results were exaggerated and generalized. The evidence didn’t support such broad conclusions, and indeed, Phil Baker had assured the NIH Advisory Panel for the Clinical [Klempner] Trials (of which I was a member) that they would not be. An equally valid interpretation would have been, “90-Day Treatment Inadequate for Chronic Lyme Disease,” but NIH ignored my suggestion. Despite subsequent research pointing out serious flaws in the study, the headline still stands today.

I agree with Specter on a couple of points: not enough money is being spent on research and when he mentioned the treatment for TB, “a complicated cocktail of drugs,” and suggested that we “have not been aggressive enough in figuring out how to treat Lyme.”

Amen to that, but withholding treatment until we have something better is not the answer.

Stay tuned for one more blog tomorrow.