Tag Archives: Lyme Literate Medical Doctors

Research Challenge #1: Summarizing My Project

I’m applying for the SSRC Dissertation Proposal Development Fellowship, which requires that I answer a number of questions about my research. (YIKES). I’m going to try begin brainstorming responses to the first three questions on this blog…

Summarize the current topic, central problem or question, relation to relevant research literatures, methods or approaches, and broader theoretical contributions of your dissertation research project. (Please keep in mind that, if you are selected as a DPDF fellow, your abstract will be placed on the SSRC’s DPDF Program website. Use language appropriate for an interdisciplinary audience and avoid or explain disciplinary-specific concepts or jargon.) * –> (up to 150 words)

My topic is the rhetoric of Lyme Disease. I want to study what kinds of arguments are being made and by whom regarding Lyme Disease diagnosis, treatment, and recovery. In general, Lyme Disease is approached biologically–as an infectious disease–and current studies are being conducted by scientists to learn more about how/when the infection is active, how people respond to different treatments, what treatments might be most effective, how to diagnose it, etc. However, Lyme Disease can (and should!) also be approach rhetorically; that is, attending to the socio-cultural factors that have influenced the ways in which it is discussed in nonspecialist/popular and scientific communities. Science journalists in the New York Times, Washington Post, and other popular sources have begun to investigate the Lyme controversy rhetorically, and I want to follow up on these analyses by studying Lyme discourse in scientific and medical peer-reviewed journals, Lyme and infectious disease research centers, nonprofit organizations that support people with Lyme, online communities where people talk and share resources for dealing with Lyme, and more. Lisa Keranen, Judy Segal, and others are much better at explaining why a rhetorical framework is helpful for studying health, science, and medicine, so I’ll have to rely on them for some support. More broadly, I think that my project is valuable because it will a) verify that much of what we know about Lyme is completely constructed and  does not rely on the results of scientific practice, and b) how ill people can use rhetorical techniques to leverage their Lyme Diagnosis as a means of acquiring better health care.

Introduce your dissertation project for an academic reader who is unfamiliar with your particular topic, region of study, and disciplinary approach. What is the central research question, problem, or puzzle that you want to investigate? Why is your project important and timely? * –> (up to 400 words)

Lyme Disease poses a plethora of rhetorical problems for medical practitioners, insurance companies, policy makers, and most notably, for patients. Lyme Disease is caused by the Borrelia burgdorferi bacterium and transmitted through infected ticks; approximately 300,000 probable cases are reported to the Center for Disease Control and Prevention (CDC) each year, most commonly in boys ages 5-9. Theoretically, Lyme Disease is simple to diagnose and treat, and recovery should begin as soon as it is treated. A diagnosis is made when a medical provider identifies an erythema migrans (EM) (also known as a bulls eye) rash on a patient’s body and/or when laboratory blood tests indicate a positive Lyme Disease result. Infected individuals who are treated with doxycycline or amoxicillin for 14-21 days should recover completely, according to the 2006 guidelines adopted by the Infectious Diseases Society of America.

Yet the diagnosis, treatment, recovery, and even the names of conditions associated with Lyme Disease are sources of fierce contention in U.S. patient and medical communities. Since the EM rash is not always present, many patients receive multiple inaccurate diagnoses based on Lyme’s ambiguous symptoms–extreme fatigue, joint pain, stiff neck, swollen lymph nodes, headaches, and more–and thus do not respond to traditional treatments. Importantly, 10-20% of Lyme patients continue to suffer from these symptoms after their initial infections are treated. This phenomena called “Post-Treatment Lyme Disease Syndrome,” or in some circles, “Chronic Lyme,” has shifted in recent years from a concept circulated in alternative online patient communities to an accepted concern for mainstream patients, media sources, and researchers alike. Some doctors are even calling themselves “Lyme Literate Medical Doctors” (LLMDs) as a way to indicate their expertise with experimental Lyme Disease diagnostic techniques and treatments.

My dissertation takes up Lyme Disease as a case study to reveal the rhetorical complexities inherent in diagnosis, treatment, and recovery from illness. I aim to examine the rhetoricity of Lyme Disease and investigate how people in various Lyme Disease communities leverage aspects of the condition to achieve particular goals. Lyme Disease is one of many conditions that prompt us to consider how diagnosis, treatment, and recovery are constructed rhetorically and for different means. However, the paradoxes inherent in Lyme’s disease lifecycle uniquely illuminate the complex points of encounter between medical practitioners and patients as they–together and separately–confront illness.

My project is important and timely because there is a  steadily increasing number of ill people in need of care and treatment.

  • Public discourse about Lyme is quickly evolving–the transition from Chronic Lyme to Post-Treatment Lyme Disease Syndrome is just one example–and researchers, medical providers, patients, and advocates need to figure out how to respond to the increasingly controversial arguments about diagnosis, treatment, and recovery.
  • A new research center at Johns Hopkins University opened in April 2015 to specifically answer questions and solve problems related to Lyme Disease.
  • Hmmm…

How do you expect your dissertation project can draw from and contribute to existing literature about the topic in a novel or interesting way? * –> (up to 400 words)

My dissertation project is innovative because it will draw from existing peer-reviewed science and medical journals, as well as existing narratives from patients with Lyme Disease, and put them in conversation. Research in the medical and health humanities suggests that medical providers do not read (and thus do not respond to) publications in humanities journals about medicine. (I need to do some research about if and how providers read and respond to patients’ illness narratives?).

  • We can get to the root, so to speak, of some of the rhetorical problems with Lyme by historicizing it. I aim to conduct a rhetorical archeology of Lyme to identify the shifts in its naming and diagnosis.
  • I hope to get at rhetorical analysis via a number of vehicles beyond traditional textual analysis. Like T. Kenny Fountain, I might take an ethnographic approach to some of this work. Hmmmm…
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