Paper short abstract:

In Scotland, Lyme-literate healthcare is a response to chronic Lyme disease as a contested illness. This unregulated healthcare system empowers patients into experts, doctors into rogue pioneers, and finances a private healthcare economy that challenges and dismantles the authority of the NHS

Paper long abstract:

Chronic Lyme disease is a contested illness (Dumes, 2020), an illness you have to fight to get (Dumit, 2006): NHS Scotland offers patients 21 days of antibiotics, after which they are labelled as 'healed', and ongoing symptoms are understood as evidence of a different medical complication. Patients who believe they are suffering from a chronic form of Lyme disease are therefore placed in the precarious situation of creating bottom-up strategies to access antibiotics and alternative forms of treatment. This is leading the contruction of a future healthcare system known as Lyme-literacy. In this initiative, patients assign expertise to and away from clinicians; organise on informal medical networks; and pay into an unregulated alternative healthcare system that spans the United Kingdom, Europe, and the United States.

Based on 12 months ethnographic fieldwork across Scotland, this paper reveals the powerful private healthcare economy currently profiting from chronic Lyme disease's uncomfortable category as a contested illness. I share the financial pathways that patients walk down as they experiment with antibiotics, herbs, food, and technologies of self-management to build allyship with their mitochondria. I discuss how polypharmacy narratives construct a healthcare that empowers patients into experts, Lyme-literate healthcare providers into rogue pioneers, and the ethics of experimenting on patient bodies in the name of creating a morally superior healthcare to replace biomedicine. This paper discusses how patients are already creating and financing future healthcare, its disparities in what "health" and "healing" means, and the important lessons this offers for how we cure and care.