LYMEPOLICYWONK: IDSA Hearings—Weinstein’s Pet Theory Shouldn’t Trump Patient Care
I have been reviewing the IDSA transcripts and reread Dr. Arthur Weinstein’s testimony. Weinstein testified in support of the IDSA Lyme guidelines at the IDSA hearing on July 30th. He argued that chronic Lyme disease is a ‘somatic’ disorder involving a “serious amplification of symptoms” and states that he “doesn’t pretend to know the etiology (cause) of the pathophysiology”. He does though assert that the serious amplification of symptoms is associated with patients who have more psychiatric morbidity and is fostered by the labeling the disease “chronic Lyme” by advocacy groups and others that believe in a traditional medical cause for symptoms. This post is part of a twofer. Today, I ask if Weinstein is right that post treatment Lyme disease is a somatic disorder or if this is simply his pet theory. Tomorrow, I ask if the somatic disorder diagnosis provides patients with good patient care.
Weinstein’s argues that Lyme is a disease of unknown etiology. Like many, he had observed that some patients complained of persistent symptoms without continued positive blood tests for Lyme and with no objective findings of disease after treatment. Now he makes some interesting observations. He notes that he and his academic colleagues have seen patients “improve temporarily with . . .antibiotics”. This comports to what patients with Lyme frequently see—improvement on antibiotics and relapse off antibiotics.
Next, he says that because he found no objective signs of disease, he “speculated that this was a post infectious syndrome. . .but we had no direct proof of such.” So this is a little refreshing, I think. He acknowledges that he has seen at least temporary clinical improvement of patients with persisting symptoms and goes even further to say that the post infection syndrome idea is unsubstantiated speculation—a pet theory, if you will. OK, fair enough. I don’t think patient care should be denied based on speculation, however. And, this I think is one problem with guidelines panels dominated by researchers—pet theory can trump patient needs.
The next step though is a big leap and misplaced. He says that there isn’t robust scientific evidence to support the theory of persistence or retreatment. I would direct him to the presentation by Dr. Phillips on persistence, which contains ample and robust evidence on persistence. Finally, he bolsters this point by saying retreatment doesn’t work. But as Dr. Fallon and Allison DeLong demonstrated at the hearing, there is evidence that retreatment improves patients illness and the Klempner study which found otherwise was too seriously flawed to be used as a basis for denying patient care.
I don’t know about you, but I would call this analysis “one, two, skip a few, one hundred”. You can’t connect the dots. He fails to prove non-persistence. He fails to prove that patients don’t improve with retreatment—in fact he acknowledges that he and his colleagues have seen patients improve, at least temporarily, on treatment. And his speculation about post infectious syndrome is no more than an unsubstantiated pet theory. Pet theories should not trump patient care.