I spent some time in the Lyme disease communities after I tested positive for Lyme disease under the official two-test CDC criteria. The pop-culture version of Lyme disease discussed on the Internet has almost no resemblance to the actual medical science. There are a lot of people genuinely suffering unexplained symptoms, real pain, who are drawn into the seductive explanations of the “chronic Lyme” communities online.

Quackery like this is commonplace. Usually there’s a thread of potential science buried somewhere in the treatments, like the idea of bee stings triggering a beneficial immune response. However, the common theme is always a complete lack of actual research and total hit or miss response rate among people who try these experiments on themselves.

One common theme in the chronic Lyme communities is that people who go into remission tend to attribute their response to whatever technique, supplement, or medication they were trying at the time. These people are desperate for relief, so they’re often cycling through 10s of supplements or quack treatments at a time. If they spontaneously go into remission, they’ll swear it was due to the supplements. Yet others fail to have the same success with the same supplements. You end up with long lists of “things that might help” according to anecdotal reports, and the desperate sufferers start trying them one by one until something changes. When they exhaust the basic supplements they move on to more exotic treatments like bee stings.

The sad part is that these people really are suffering, but they’ve become so militantly attached to the disproven chronic Lyme infection hypothesis that they’re stuck in a research wasteland. Self-diagnosed Chronic Lyme patients have gone so far as to harass researchers who publish results that disagree with their theories. It’s such a delicate topic that researchers and doctors don’t even want to touch the subject these days. It took me 2 weeks of calling infectious disease specialists and screening my positive test results before someone would let me step foot in their office. Apparently they’re buried under self-diagnosed “chronic Lyme” patients who order questionable self tests on the Internet.

As for Lyme disease: The actual infection can be treated with a standard course of antibiotics. The infection does not persist indefinitely, although some people experience long-lasting effects after the infection is gone. This is what “chronic Lyme” refers to, assuming the patients had legitimate infections in the first place. Many of these patients are self-diagnosing based on vague symptoms alone, or ordering quack tests from Lyme labs that will give anyone a positive result as long as they’re willing to pay for it.