New diseases are pretty rare these days. It used to be that a good observer could travel to the great unknown and acquire/discribe scads of new (to them) diseases. In the interconnected world of the present, “new” diseases spread rather quickly, and become old. When I was a young attending physician, I had heard of West Nile Fever from small chapters in medical school books. When I took over an inpatient medical service in the summer of 2002, I was taking care of several patients with the disease. It was new to me, but hardly new. Sometimes I wonder if people miss the great days of disease discovery, and try to make up for it by inventing their own diseases.
Here at denialism blog we’ve occassionally written about “fake diseases”, that is, diseases that are not recognized by science-based medice, have no clear definitions, and attract quackery. One of these diseases is Morgellons syndrome, an ill-defined malady recognized by no one other than patient advocacy groups and their stooges. Another plays on a real disease, but tries to stretch that disease’s definition to include just about any symptom you could imagine.
Chronic Lyme disease is the name given by a diverse group of patients and physicians who have in common a belief that a relatively common disease can continue to cause debility long after the disease is gone. The disease in question is Lyme disease, a tick-borne bacterial infection common in the Northeast U.S., and in scattered other parts of the country.
Since Lyme disease was first described in the U.S. in the latter part of the 20th century it has fascinated doctors and researchers. The ecology of the organism, its dependence on ex-urbanization, and it’s unique symptoms are very interesting. Combine that with how common it has become in a densly populated part of the country, and this disease is a winner.
The rash is quite characteristic, having a particular bullseye pattern. In endemic areas, this is virtually diagnostic of the infection. It also can cause an unusual arthritis, and if untreated, the disease can cause recurrent joint, neurologic, and cardiac disease. Usually symptoms resolve spontaneously.
The ability of this disease to cause late symptoms has attracted quite a bit of quackery. Lyme disease used to be rather mysterious, but not so much anymore. Diverse sypmtoms that appear in a large percentage of the population, such as fatigue, memory problems, headaches, and depression, are sometimes attributed to “chronic Lyme disease”, and people are subjected to costly, dangerous, and unproven treatments.
Some of the more credulous ideas about this “disease” include the idea of “sero-negative Lyme disease”, meaning there is no evidence in the blood, but people are labelled with the disease anyway. Sometimes, blood is sent to renegade labs that run unapproved tests for the disease.
For ease of analysis, chronic Lyme patients are often divided into four groups (NEJM, Volume 357(14):1422-1430. October 4, 2007).
Group one is patient with protean symptoms and no evidence of infection. Group two is those who have real diseases misdiagnosed as Lyme. Groups 3 and 4 have evidence of actually having had Lyme infection in the past, but their symptoms aren’t necessarily consistent with actual Lyme infection.
The first two groups seem to attract the worst of the quacks—those that diagnose and treat patients for a disease for which there is no evidence. I have seen patients treated for months on end with intravenous antibiotics for no apparent reason, subjected to all the complications inherent in long-term invasive therapy.
What is interesting about fake diseases is that there are people out there suffering, but without a clear diagnosis (or sometimes with a clear diagnosis that they don’t accept). Advocacy groups form, and fringe doctors, scientists, and other fake experts are pulled into the vortex. These advocacy groups not only push for unproven, unsafe treatments, but actually threaten doctors who listen to science rather than some hostile internet message board. In fact, I can pretty much guarantee a visit from them here very soon.
It’s a real problem, for doctors and for patients. Patients with real pain end up enriching doctors who practice questionable medicine. For patients, it’s a lose-lose scenario. But they love their charismatic leaders, and that bond it tough to break.