A description of 'Australian Lyme disease' epidemiology and impact: an analysis of submissions to an Australian senate inquiry

Background: Many Australian patients are diagnosed and treated for the scientifically and politically controversial diagnosis of an endemic form of 'Australian Lyme Disease'. Patient advocacy led Senator John Madigan to propose an Australian Senate Inquiry into this illness. Aim: To describe the symptomology and outcomes of patients diagnosed and treated with Lyme disease in Australia. Methods: All public, first-person submissions (n = 698) to the inquiry were reviewed and responses analysed for epidemiology, symptoms and impact against structured criteria. Results: The most common symptoms described were fatigue (62.6%), disordered thinking (51.9%) and sensory disturbance (46.1%). Respondents reported experiencing symptoms for a median of 10 years and spent a median of $30 000 on diagnosis and treatment. Almost 10% of respondents self-diagnosed after being exposed to a media report of Australian Lyme disease. Conclusions: Patients diagnosed with Lyme disease in Australia display a symptomology similar to 'medically unexplained physical symptoms' syndromes, experience social and financial harms, and are at risk of nosocomial harms. Negative medical interactions and the media may contribute to patients seeking alternative and potentially non-evidence-based diagnoses and treatments.