Final Paper/Project Proposal – Lyme Disease

Topic Summary

I am choosing option two for the final project, interviewing someone with a chronic disease. I have chosen chronic Lyme’s disease because I have known many people who suffer from this disease and have learned enough about it to be curious about its complexity. It appears as if Lyme Disease is one of the few (if not only) diseases treated as a social construct and not a medical condition by the medical profession. This surprising finding lead to shocking research, for example, it appears as if the validity of the lived experience of those who suffer from the disease is discredited, for “Interestingly, people on both sides of the debate seemed to share the assumption that suffering is legitimate only if linked to a “real” disease” (Aronowitz & Weintraub, 2011, para. 11).  As Pamela Weintraub noted, the social experience of those who have Lyme disease is as much a “symptom” of the disease as any change to the person’s physical condition.  In addition, the manner in which victims of the disease in the United States are treated by the medical community has a negative impact on their wellbeing and their day to day social existence. 

I will interview a friend I know who has told me she has chronic Lyme’s and delve deeply into her experience. I already know that getting this disease has transformed her life and that dealing with it has required a lifestyle change and a reassessment of priorities which puts health first. I will ask questions about how she got the disease, and if the social definition of the disease in the United States impacted her seeking treatment, and the treatment she received (or did not) by a medical community that doesn’t believe in the condition.  This leads directly to social effects and an impact on her day to day lived experience of the condition: emotionally, mentally, psychologically, socially, and financially. I will use the research I gather to make informed questions and inform myself of the scholarly/common debates going on surrounding this issue. I have questions about why and how such a prevalent and frightening disease can be denied by contemporary medical science. 

Annotated Bibliography: Chronic Lyme’s

Aronowitz, R. & Weintraub, P. (2011). The social construction and human face of tick-borne disease. Institute of Medicine. Washington (DC): National Academies Press. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK57014/

One of the first points to take away from this article is how Lyme Disease is understood differently in Europe and America.  This is a rather uncommon, if not unprecedented fact, and demonstrates that Lyme Disease is as much a social construct as it is a medical condition.  The vast majority of diseases are not treated as cultural/social constructs, so this leads to the question we hope to answer in the paper, does the social, rather than the medical construction of this disease affect the lived experience of the disease? Do people who suffer from it in Europe and in America have a different experience of the disease? The lived experience and social interaction of those who have contracted the disease are detailed in this study and can be used to support the claims made in interviews.

Feder Jr, H. M., Johnson, B. J., O'Connell, S., Shapiro, E. D., Steere, A. C., & Wormser, G. P. (2007). A critical appraisal of “chronic Lyme disease.” New England Journal of Medicine, 357(14), 1422-1430. Retrieved from: http://www.nejm.org/doi/full/10.1056/NEJMra072023#t=article

Much Lyme’s research is done in New England because that is one of the largest concentration of the outbreaks, though it is spreading throughout the nation at alarming rates. This source presents the common medical perspective that antibiotics work to cure Lymes, to which there is considerable experiential evidence to the contrary. This source will be used to understand the symptoms of CLD, which are diverse across the body, mind, and emotional panoply of the being. In typical medical avoidance of possible failure of antibiotics, researchers respond to the “usually mild and self-limiting subjective symptoms as ‘post–Lyme disease symptoms,’ and if they last longer than 6 months, we call them ‘post–Lyme disease syndrome’” (Feder et al., 2007, p. 1422). This is one step towards admitting CLD exists.

Johnson, L., & Stric, R.B. (2010). The Infectious Diseases Society of America Lyme guidelines: A cautionary tale about the development of clinical practice guidelines. Philos Ethics Humanit Med. 5(9) doi:  10.1186/1747-5341-5-9. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

This is a valuable source from a scholarly sociological journal which presents some of the reasons that CLD is often rejected by vetted medical/insurance companies. Conflicts of interests on judging panels, flawed clinical perspectives, and a willful shielding of the public from the severity of the threat are presented. Connecticut has sustained the most virulent outbreak of Lyme’s, and “in May 2008, the Attorney General of Connecticut concluded a ground-breaking antitrust investigation into the development of Lyme disease treatment guidelines by one of the largest medical societies in the United States, the Infectious Diseases Society of America (IDSA)” (Johnson & Stric, 2010, para. 1). This is a strong precedent for addressing corruption in Lyme’s research and treatment. This source will be used to support the interview with a sociological perspective.

Marcu, A., Uzzell, D., Barnett, J., & O’Connell, S. (2013). Experience of Lyme disease and preferences for precautions: A cross-sectional survey of UK patients. BMC Public Health 13(1), 1-7. 

Since the claim is made that Lyme Disease is defined and culturally constructed differently in Europe and America, this study provides data from English research into the disease.  In England, Lyme Disease is seen more as a medical condition than in the United States, which leads to a different experience of the illness by those who suffer from it.  The study also brings up sociological data collected before the patients contracted the disease, like a person’s awareness of the existence of the diseases, the frequency of going out into the countryside, or the belief that it was or was not possible to contract the disease.  The study also hoped to determine if raising the social profile of the condition impacted the rates of either contracting or reporting symptoms.

Organicolvia. (2015). Lymes Disease: The CDC’s greatest coverup & what they don’t want you to know. Collective Evolution. Retrieved from http://www.collective-evolution.com/2015/04/16/lyme-disease-the-cdcs-greatest-coverup-what-they-dont-want-you-to-know/

This source is from a website which is a blog spot on evolutionary issues with many links to products which support the evolution of the mind/body/spirit link. This source is outspoken about the CDC cover-up of the severity of Lyme’s. The CDC admits that in America there is likely 300,000 new cases per year with makes Lyme’s more prevalent than breast cancer. This source addresses one problem with a diagnosis that tests are difficult to pinpoint, and if the infection is not caught within three days of the bite antibiotics will be ineffective and also weaken the body’s ability to fight. This small window is why Lyme's so often become chronic, and it is likely that many more cases are going unreported. This source will be used to aid the interview about why my friend cannot turn to doctors for help, as doctors who admit and treat chronic Lyme’s disease have been prosecuted and put out of business. It also limits the care that nurses are allowed to administer.

Rebman, A., Weinstein, E., Aucott, J., & Leonard, L (2015). Living in limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. Qualitative Health Research. December, pp 1-15. DOI: 10.1177/1049732315619380 Retrieved from https://www.researchgate.net/publication/285596127

This is a valuable study for this paper, as it not only backs up the claim of Lyme Disease being classified as a social and not medical condition, and it records clinical and sociological data from several groups of victims of the disease (and victims of the medical community).  It “used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a "new normal" characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways”(p.1).  An interesting finding is that people with Lyme disease feel they are personally responsible for the condition, not just in the sense of self-treatment, but almost like a feeling of guilt. The way the medical community treats those with the disease seems to have a negative impact on their wellbeing and their day to day social existence.