When it comes to anything “Chronic Lyme” — be careful. There are two distinct worlds in Chronic Lyme research: One world involves researchers looking for the c

When it comes to anything “Chronic Lyme” — be careful. There are two distinct worlds in Chronic Lyme research: One world involves researchers looking for the cause of very real symptoms that can persist in some Lyme disease patients even after treatment. This could come from some damage done by the infection, a lingering autoimmune response triggered by Lyme disease, or some other unknown lasting state that occurs after the disease in some patients. This is commonly known as “Post Treatment Lyme Disease” syndrome and it isn’t as controversial as some of these articles make it sound. The other world is an alternative medicine faction that has misused Lyme Disease as a catch-all label for unexplained chronic symptoms. They leverage the non-specific list of Lyme disease symptoms and some of the unknowns about the disease to convince desperate patients that Lyme is an explanation for all of the difficult problems their doctors haven’t been able to diagnose. They try to convince people that normal Lyme tests aren’t sensitive enough to detect infections and therefore should be ignored, leading many to think they’re positive despite negative tests. There are even speciality labs that claim to have developed their own Lyme tests. Virtually everyone who submits a sample to these labs comes back positive, regardless of their actual status. To be clear: Patients in both groups are suffering very real symptoms. The debate is not about whether or not these people are sick. The issue is that “Chronic Lyme” has become so crowded by pseudoscience and quackery in the latter group that there are scores of people on the internet who don’t actually have Lyme disease yet are convinced that Lyme explains all of their problems. This has made a mess of the public discourse on the topic and even made such a mockery of the field that many researchers have opted to avoid the topic of Lyme research altogether for fear of being associated with the quackery. We need to have sympathy for patients in both groups, as they are clearly suffering. However, we also need to be clear about drawing a line between the pseudoscience and the real science, which isn’t always as easy as it looks. Journalists and writers like this one tend to start playing a “both sides” strategy to blur the lines between the real science and the pseudoscience. When people have vague, unexplained symptoms, it can be tempting to go down the path of “what if the pseudoscience is actually right…”. Resist that urge, though. Too many patients are stuck with a misdiagnoses of Lyme disease when they really have some other condition. Encouraging the pseudoscientific chronic Lyme explanation for everything is only holding them back from finding their real diagnosis.