Alternative narratives to the discovery of Lyme disease

Borrelia burgdorferi, the bacterium that causes Lyme disease, was first isolated in 1982 by Willy Burgdorfer, Ph.D., a zoologist and microbiologist at NIAID’s Rocky Mountain Laboratories (RML) in Hamilton, MT. The following is a brief history of this groundbreaking discovery.

So begins the description of the medical discovery of Lyme disease from the National Institute of Allergy and Infectious Diseases (NIAID). An agency of the National Institutes of Health, NIAID conducts and supports basic and applied medical research on infectious and allergic diseases to increase scientific knowledge and advance methods of treatment and prevention. Set in the disciplines of microbiology and immunology, in recent years this work has focused on asthma, bioterrorism, and emerging infectious diseases. Lyme disease—in belonging to the latter category—has been a principal interest to the agency, the focus on which has been on understanding the mechanisms of the bacterial organism’s pathogenesis, its modes of transmission, and antibiotic therapy.

B. burgdorferi spirochete. Image courtesy of NUCEL International Integrative Medical Center

According to this state narrative, Lyme disease—a bacterial infection transmitted by Ixodes scapularis, the black-legged tick—was discovered in 1975 when a team of researchers led by Dr. Allen Steere investigated why unusually large numbers of children were being diagnosed with juvenile rheumatoid arthritis in Lyme, Connecticut. In an early epidemiological report, Steere’s group examined the health status of 51 residents with the illness, characterized by ongoing swelling and pain in large joints. Published in 1977, the study argued the causative agent of the disease to be an unrecognized pathogen, possibly transmitted by an arthropod vector. The researchers found the disease to be highly complex, variable, and confusing, with some members of the cohort suffering from a short weeklong bout of illness while others experienced symptoms for months. When initial research found that 25% of residents with the illness developed an expanding red rash known in the medical literature as erythema migrans and that the majority of the towns’ cases were found in children living alongside wooded areas in the summer months, the team suggested the new disease could be related to the life cycle of ticks, particularly those of the Ixodes genus. With the assistance and expertise of Willy Burgdorfer, a medical entomologist specializing in tick-borne bacterial transmission, the researchers pinpointed the black-legged tick as the previously mentioned vector. Then, in 1982, Burgdorfer successfully isolated Borrelia burgdorferi from patients with the illness, proving that the spirochete bacterium caused what came to be known in medical and lay circles as Lyme disease.

Adult female I. scapularis

This account of medical detection is not confined to only the NIAID and other government research agencies—it circulates as the most common narrative in the biological and medical literature (Reik Jr 1991; Christen 1994; Reid 1998; Steere 2001; Knisley & Johnson 2004; Meyerhoff 2009; Sterle & Stanek 2009). As part of an institutional narrative of biological science’s importance, the account not only mentions the actions of and exchanges between epidemiologists, physicians, entomologists, and bacteriologists, but also frames these actors as the sole and vital components of the discovery, recording the event within a certain framework of what is and is not important. What’s at stake in recording the past within a particular perspective is not a rejection of scientific materiality, but rather an illustration of how what is ignored in our records echoes what continues to remain absent in contemporary discussion. Anthropologist Ilana Feldman follows this notion with the comment,  “There is no doubt that memories of the past say a great deal about people’s attitude in and towards the present.” Particular to the institutional memories created through state documents, Julie Taylor also notes the tensions implicit in certain modes of narrating the past. She writes that such documents inherently contain a politics of information, of including some parts of the past and excluding others:

Memory does not only salvage, construct, and invent. Memory as constituted is exclusionary: it omits what hierarchy does not recognize. Thus authority admits some narratives and omits others in a process of articulating memory and power. Remembering, then, is a process of forgetting.

Written objects of memory, such as legal or scientific documents, fall into particular genres, what Taylor defines as collectively recognizable shapes of accounts. All genres frame lives and experiences, and so contain the capacity to trivialize or omit certain accounts of perspectives that fall outside their specialized framework. In scholarship of memory, researchers have long pointed to the importance of this politics (Das 1987; Trouillot 1995; Stoler & Strassler 2000). In particular, they focus on the notion of silences in the historical record—Michel Rolph Trouillot notes that exclusions and absences in history are due not to the fault of historians or record-keepers, but instead to the power relations in any contemporary that shape a public’s and a discipline’s understanding of what information and sources are seen as vital. Others likewise argue that we should approach memory by focusing on not only what is remembered but also how. By critically examining how an event is recorded, remembered, and represented in the present, narratives and documents—as Feldman notes—can illustrate contemporary tensions and attitudes.

As one such analysis reexamining the event of the 1984 Bhopal disaster, Kim Fortun asks, “What is promised by remembering differently?”  A related telling of the discovery of Lyme disease set by Berton Roueché in his The Medical Detectives offers one alternative to the scientist-centric record.

You may remember the story. It’s interesting. A woman in the Lyme area was the real pioneer. Back in the summer of 1972, her child developed a painful arthritis in the knee, and in talking with her friends and neighbors she discovered that a number of other children around there were suffering from the same thing. She apparently knew enough about arthritis to realize that a cluster of cases of a disease like that was unusual. She got in touch with the state health authorities, and Steere heard about the outbreak from them.

The scientific account of the discovery of Lyme disease demonstrates an absence of sorts. What is removed from the initial government–scientific accounts of 1975 Lyme, Connecticut and continues in discussions today of outbreaks is an attention to popular networks and ways of knowing, and how these in turn enable the spread and contestation of information regarding a community’s health. Unlike the NIAID’s narrative, that of Roueché stresses the importance of the work and struggle of parents—particularly mothers—to contact neighbors and friends in order to alert one another to the related problems occurring in their children. The editors of The A to Z of Infectious Diseases likewise write that these mothers “discovered that many others in the area had the same condition,” and consequently were able to bring their concerns to the team of researchers that underwent the scientific investigation. These networks of social relationships both helped residents understand health patterns and allowed them to share and exchange information regarding an unknown and common illness, which was the ultimate driving force that garnered support for Steere’s funded epidemiological study of Lyme disease.

Segment of a network map. Image courtesy of Wikimedia Commons.

The process undertaken by parents in Lyme is similar to another case of childhood disease detection chronicled by sociologist Phil Brown. In 1972, residents of Woburn, Massachusetts learned from household observations and conversations with neighbors that their children were contracting leukemia at high rates. Recognizing this pattern, affected families and community activists attempted to institutionally connect these health problems to industrial toxins leaching into the city’s water supply. The residents pursued a lengthy course of action that led to an important community health study, a civil suit against two corporations, and national media attention. In both Woburn and Lyme then, alongside similar stories such as the struggle at Love Canal, these conversations and exchanges between neighborhood residents over the changing health status of their members constitutes the base of what Brown calls popular epidemiology, the process by which “laypersons gather data and direct and marshal the knowledge and resources of experts in order to understand the epidemiology of disease, treat existing and prevent future disease, and remove the responsible environmental contaminations.” Viewing this form of health investigation and advocacy as a manifestation of democratic upsurges in science policy, the objective of Brown’s popular epidemiology is the institutional change  initiated by community pressure and action seen in these events.

This form of “citizen science” rests upon and prizes itself on a foundation of ordinary people’s everyday observations in their immediate environment. These acts of noticing and discussing gain their priority and importance owing to the fact that, as Brown notes, “people often have access to data about themselves and their environment that are inaccessible to scientists […] Even before observable health problems cop up, lay observation may bring to light a wealth of observable data.” Implicit in the story of Lyme, or Woburn, or Love Canal, or the many others is a concept of agency, one that recognizes the power and potential of these modes of knowing, these experience-based understandings of the home and concerned individuals driven across social networks.

Any account of an event will omit specific views—with the whole world to digest, selection is a natural and unavoidable act. The point of these ideas, and their relevance to community health, is that by remembering in this way—where community struggle and everyday monitoring are relegated to the backdrop of medical surveys, host–vector relationships, and laboratory assays—this mode of seeing the world and this power dynamic between citizens and experts becomes normalized. Our present depictions of the past reflect back at us—glare clouds our vision, and we only see what we already have made ourselves. Other possibilities become faint. And so the other Lyme stories, the Love Canals and the Woburn communities of the world, groups fighting to have their observations heard, become just another host of concerned parents among hard times, another group of social movements among revolutions, more noise to visions of progress. To forget these actions is to discount the autonomy we have as viewers and knowers of our home, our families, our neighborhood—our own space, our intimacies. In the end, while reconstructing histories and narratives is not the penultimate change to be made,  the question still holds: what can be promised by remembering differently?

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4 responses to “Alternative narratives to the discovery of Lyme disease

  1. There’s a tendency in science and medicine to discount observational data, particularly that collected in any non-systematic way. In the absence of a compelling theoretical framework, such data is often discounted as noise, or worse, dismissed entirely.

  2. yes, that’s P. Brown’s central point and what I take issue with when it comes to how we’ve institutionalized the narratives and process of “disease detection.” i do agree with the sciences that systematic data should be our goal in research; at the same time, everyday ways of knowing tend to be just as important when it comes to building a framework from which field data can be systematically (and randomly) collected. take the majority of natural history surveys of the New World in the 18th and 19th century. a large percentage of those naturalist-explorers did rely on the locals’ knowledge of geography/fauna/travel routes to obtain their specimens. but yet most accounts at the time–and still today–finalize those stories from a naturalist-centric perspective. discovery, the point being, is a back-and-forth dynamic between subjects/groups, and it is important that this form of tension be a part of how we remember and continue talking about such events and processes.

  3. I thought your article was going to illustrate the self-aggrandizement of these institutions by showing that Lyme disease was  actually discovered repeatedly over hundreds of years by scientists (and laymen) across europe and elsewhere. This was done nicely by wikipedia, which gives lie to the exclusivity of US NIAID discovery: http://en.m.wikipedia.org/wiki/Lyme_disease#section_9. However, somewhat less revealing, your article credits a mother in Lyme, CT in 1972 with the discovery.

    I agree whole-heartedly with Taylor’s perceptive view. But this article simply reinforces Taylor’s point that “history is what we forget”: the dozens of non-american scientists who recognized and treated the disease over the centuries, and recognized it’s association with ticks and sporochetes. Add to that our “forgetting” that Native Americans lived with (and likely recognized and treated) the disease for thousands of years (http://news.yale.edu/2009/08/10/lyme-bacterium-once-nearly-eradicated-us-rebounded-forests). But this knowledge is not in our paradigm of white American scientific discovery. Worse, we did not merely “forget” what the natives knew, we actually exterminated much of it (though much could still be retrieved with a little effort).

    To be historically accurate, I should add that Lyme disease has occupied not only Native Americans for eons, but also Europeans for over 5000 years – http://news.discovery.com/history/iceman-mummy-lyme-disease-120228.html.

  4. Conrad Brisby

    Lyme disease is named after a cluster of cases that occurred in and around Old Lyme and Lyme, Connecticut in 1975. Before 1975, elements of Borrelia infection were also known as “tick-borne meningopolyneuritis”, Garin-Bujadoux syndrome, Bannwarth syndrome or sheep tick fever.-

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