As I’ve written before , there are few clinical encounters more challenging for Infectious Diseases specialists than the patient who, despite negative standard diagnostic testing, believes he/she has Lyme disease.
Now, in Lancet Infectious Diseases, comes a paper entitled “Antiscience and ethical concerns associated with advocacy of Lyme disease.” It meticulously describes the distinctive world of alternative diagnosis, treatment, and passionate advocacy related to Lyme.
Some highlights — first, the background:
As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science.
And those odd diagnostic tests, often paid for out-of-pocket by the patient?
Despite warnings from the US Food and Drug Administration and the CDC about the potential unreliability of unvalidated diagnostic tests for Lyme disease, many LLMDs [Lyme-literate MDs] continue to use such assays. [Specific assays are cited in the full article.] Lyme specialty laboratories are favoured by some activists and LLMDs because their non- standard testing methods and interpretation criteria often lead to more positive results than other laboratories that rely on validated methods.
What to do?
Many patients who have been labelled as having chronic Lyme disease arrive at this diagnosis as a consequence of inadequate or frustrating previous medical care for symptoms that are difficult to define. Patients who suspect or who have been diagnosed with chronic Lyme disease should consider seeking a comprehensive assessment from an empathetic physician..