I couldn’t help myself. Even though I know how stubborn and self-righteous the naysayers can be, I was pulled into the fray in a recent editorial debate regarding a long article about chronic Lyme disease in Science Based Medicine’s online journal. SBM posted an article last week, Chronic Lyme Disease – Another Negative Study which I could not let go unanswered. I usually try to avoid these fights because people who take this kind of non-compassionate and close minded stand will typically find reasons to shut down any kind of logic other than their own (and also because I get so upset.)
The editor of this article was unwilling to accept any of ILADS position papers and discounted Dr. Bransfield’s list of 700 medical studies that are published in peer-reviewed medical journals because they involved animal studies or test-tube studies. I guess he thinks that humans should be carved open for any meaningful test results.
This online argument came just after the media frenzy over a new European study showing (as they put it) that longer courses of antibiotics don’t work for curing Lyme disease. That is the take that journalists have promoted after the release of one very skewed clinical trial on chronic Lyme disease from Europe called PLEASE was published in the New England Journal of Medicine (NEJM).
However, the real story was quickly released by Lorraine Johnson in CALDA’s Policy Wonk blog: “…You Know It’s a Spin When Treatment “Success” is Called “Failure”. I highly recommend you read the entire synopsis. The major point that Ms. Johnson makes is that all patient groups improved with IV Rocephin/ceftriaxone and there were very few serious adverse events associated with treatment.
So how can the authors or the press spin this trial as a treatment failure? Apparently, it’s all in how you define success. Read article here.
Further media headlines have to do with legislative efforts at the nation’s capital and also in Boston where decades of activism are finally bearing fruit. Nationally a Lyme bill has passed congress and is going before the senate for vote very soon. News agencies report that Lyme disease is the most serious threat to hit young people (age 3 -14) in decades. S.1503 “Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015” has gained tremendous support in spite of the medical controversy shrouding chronic Lyme. However, the story is very different in Boston.
Massachusetts legislators are being bombarded by mail and phone calls, and the media has jumped in the fray big time. The bill in question would take more tangible steps to give aid to families that suffer from chronic Lyme disease by (among other things) requiring insurance companies to pay for more than one month of treatment.
Michellle Treseler wrote an excellent editorial in response to the back-to back articles in the Boston Globe (March 28, 2016, and three days ago on April 6, 2016) denouncing chronic Lyme and long-term antibiotic treatment prescribed by numerous doctors. The bill has already been signed on by 70% of lawmakers so experts expect the bill to pass in spite of the hot opposition.
You can imagine how the stream is pouring out of Harvard’s collective head where Dr. Alan Steere is also facing a federal mandate to update the IDSA guidelines, and being held accountable to add patient representation. The guidelines were originally developed in a storm of heated debate with some panel members being kicked out over the ensuing argument from Dr. Steere and his cohort’s adamant refusal to even mention chronic Lyme disease. The same players are hoping to push through identical guidelines but will find it harder this time due to the recent studies by Stanford and John Hopkins regarding “persister” bacteria (in other words Borrelia does in fact persist after antibiotic treatment.)
This may not help those of us who are suffering now, but hopefully it will help our children and future generations from having to suffer in the grey areas of developing medical understanding. And thankfully most doctors still treat their patients for chronic Lyme despite the IDSA guidelines.