Lyme disease patient organizations have formed to challenge a health system that is failing
Canadians who suffer from a disease that is ambiguous in its symptomology and trajectory. The
framework of an embodied health movement illustrates the importance of the illness experience in
mobilizing patients to oppose a system that is reliant on restrictive guidelines that deny testing and
treatment and to seek alliances with researchers, physicians, and politicians who are sympathetic
to their goals. The strategies of Lyme disease patient organizations, the importance of experiential
knowledge, and the roles of both adversaries and allies are examined through a “small wins” approach
to gauge successes and setbacks within a Canadian context.