This kind of approach would take the blinders off Lyme disease research, reversing the funneling of thought that has gone on for decades. “I don’t want to be critical about the past, but more is possible now,” Luft says of Lyme’s old guard.
In defending its turf, this old guard has continually pitched its science against the anecdotal stories of very sick patients, as if the antiseptic "objectivity" of one trumps the sheer desperation of the other, proving they must be right. This is a cop-out. The original IDSA panelists must stop comparing their neat but porous studies to the travails of some embattled Lyme doctor, and must instead be made to hold their work up to that of other university-based scientists. The new panelists will have to hold them to this second standard if they are going to do the job. As someone who has traveled the country for six years interviewing these scientists to write my book, Cure Unknown: Inside the Lyme Epidemic, I can tell you unequivocally that many of the top researchers at the top institutions in the world do not think the original IDSA panel got it right.
In the spectrum of scientific opinion on these issues the old panel represents an extreme right wing of thought --not compared to other infectious disease doctors, who have simply followed their lead, but compared to other researchers, especially the true bench scientists who actually study the organism in the lab. It behooves the new panel to go beyond the work of the old panel in their examination of the science, I just don't know if they will
We must move on --but will the new Guidelines panel help? Given the history of the Lyme struggle and the politics at IDSA, the odds seem low. In the State of Connecticut, where Lyme disease was first widely studied in populations, hearings pit the two sides: Those who want to rubber stamp the current IDSA guidelines versus those who want protection for doctors defying them when patients stay sick; those who say we know all there is to know about Lyme disease right now versus those who say that only further research will light the way and help patients get well. The fight goes on. But while you can skew the evidence in your guidelines, you can't stop the march of science. You can try to disappear a disease --but in the face of a burgeoning epidemic with ever more people sick, would you really want to succeed?
Pamela Weintraub is the author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine.
