People who develop the characteristic ‘bullseye’ rash and are symptomatic can normally be diagnosed and treated with antibiotics. However, for those who do not notice or do not develop the classic rash, the process of diagnosis is more complicated as Lyme disease has a wide range of non-specific symptoms which can overlap with many illnesses, including ME/CFS, leading to misdiagnosis and incorrect management.
NICE recommends a two-step diagnostic process involving lab tests to confirm the presence of the antibodies produced in response to Lyme disease bacteria. It is worth noting that antibodies may take weeks to develop, so newly infected patients may test negative. It is also possible to get false positive results if certain other infectious, inflammatory or autoimmune diseases are present.
According to NICE guidelines, ME/CFS can be suspected at 6 weeks and clinicians can start carrying out investigations to exclude other medical conditions. There is a chance that Lyme disease antibodies may not always be detectable at 6 weeks, which opens up the possibility of misdiagnosis with ME/CFS. Reports of moves to develop a “one-stop diagnostic test for the early detection of Lyme Disease” are therefore to be welcomed.
It seems the converse is also true – patients with ME/CFS may be misdiagnosed with Lyme disease. The Tropical and Infectious Disease Unit in Liverpool undertook a 2012 case note review of patients referred to it with suspected Lyme disease, and showed the possible extent of misdiagnosis. After investigation at the Unit, 27 patients (23%) were indeed diagnosed with Lyme disease. However, 38 patients (33%) were given a diagnosis of ME/CFS, since none of them had clinical features that were suggestive of active Lyme disease, or a positive reference laboratory serology.
Intriguingly, almost half of people with ME/CFS had been labelled as having ‘chronic Lyme disease’ by alternative practitioners and had been advised to take multiple and prolonged courses of antimicrobials. Overall, at least 53 unnecessary antibiotic courses had been given by non-NHS practitioners (and 21 given by NHS practitioners) to people who did not have Lyme disease.