A recent newspaper column published locally highlighted a child with serious health problems that was being treated as chronic lyme disease. The author complained that the influential Infectious Disease Society of America “has declined to recognize” chronic lyme, spoke of “discrimination against an illness,” noting that “none of them(doctors) want to do anything.” The article goes on to review the prolonged course of antibiotic treatment being administered. It’s noteworthy that the article states that the child is improving with ongoing medicine but even there it only speculates as to when the child will be well enough to return to regular activities like school.
There’s a lot here. Firstly there’s a sick child and a family seeking answers, let alone treatment. We know that following treatment under accepted guidelines up to 20% of patients persist with unclear and nonspecific complaints (headaches, fatigue, insomnia, weakness, recurring illnesses) >6 months after completion of therapy–so called post treatment lyme disease syndrome. I have witnessed during my career how doctors at all levels of expertise have–with usually (but not always) pure motives–identified and treated patients with these troubling problems with vague terms like chronic lyme, chronic mono or EBV, chronic fatigue, reactive hypoglycemia, and others. I am not arguing whether these are “actual” diseases or not. I am no expert in this area. These people are suffering and need real help.
The problem is–how do we help? One very fair criticism of American medicine is its wastefulness–up to $900 billion/year according to a study in the Journal of the American Medical Association–much on unsubstantiated or unnecessary care. Beyond the monetary costs is unproved treatments can do worse than nothing and sometimes cause actual harm. I myself have personally treated children with serious complications after unapproved prolonged antibiotic therapy. Studies in the New England Journal of Medicine have found no benefit to this approach. Yet its use persists.
And that’s the thing. It isn’t that nobody wants to do anything or wants to “discriminate” or “not recognize.” Its hard to do it RIGHT–to be effective AND safe. Anecdotal reports and personal testimonials–no matter how dramatic and heartfelt–are insufficient. We need scientific studies–“controlled” (one group untreated for comparison) and “double blind”(neither subject nor studier knows who is in which group; this removes observation bias); peer reviewed (other experts look over the experiments to assess methods, accuracy, etc); and reproducible results (different studiers, similar outcomes). That information is simply lacking with these various unorthodox lyme’s therapies.
Anybody who claims that scientists back each other up and cover for their peers clearly doesn’t know how these scholars operate. They live to criticize each other. Its very much how they define themselves.
So what do we do? When people are struggling in these confusing and debilitating situations, we must listen to them and work to figure out how to help. We must give answers and we must be honest that sometimes the answer is “I don’t know.” We should intervene where and how we can, but based on carefully gathered evidence. With the oath we doctors take we promise to “first do no harm”–endeavor to never hurt the patient: the cure must never be worse than the disease. And these are exactly the situations where we must take those words closest to heart.
Thanks for following.
Dr. Charles Geneslaw 