Objective: We aimed to describe the experiences of Canadians who seek diagnosis and treatment for Lyme disease outside of the conventional Canadian health-care system.
Methods: Forty-five individuals who had sought treatment for Lyme disease outside of the conventional Canadian health-care system were recruited from Lyme support and advocacy groups across Canada to answer open-ended questions about their experiences.
Results: Respondents sought treatment outside of the conventional medical system due to extensive diagnostic procedures and treatments that did not resolve symptoms. Escalating health concerns, lack of effective treatment, and stigma produced a sense of abandonment and desperation. Respondents accessed alternative forms of care based on the recommendations of peers, yet considerable financial and emotional stress was experienced.
Conclusions: Many individuals with Lyme or Lyme-like diseases are deeply dissatisfied with the care received within the conventional Canadian health-care system and therefore felt both pushed and pulled to seek treatments either from international physicians using different treatment protocols or from alternative medicine providers in Canada.
Keywords: Canada; Lyme diagnosis; Lyme disease; Lyme treatment; complementary/alternative medicine; medical tourism; patient perspectives/narratives.