Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases The Short-Term and Long-Term Outcomes: Workshop Report (2011) / Chapter Skim
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3 The Social Construction and Human Face of Tick-Borne Disease
3 The Social Construction and Human Face of Tick-Borne Disease
Pages 25-36
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From page 25... ...
As the history of Lyme disease suggests, the definition of a disease often results in winners and losers, and controversy among the stakeholders is apt to follow.1 To place the discovery of Lyme disease in the United States in context, it is helpful to review earlier events in Europe. As early as 1910, European clinicians described a rash they called erythema chronicum migrans following a tick bite.
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From page 26... ...
. Although this report received little attention, a Danish doctor participating in dermatology grand rounds at Yale connected the cases to erythema chronicum migrans in Europe.
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From page 27... ...
This dispute partly concerned the vaccine's benefits and risks; however, the core issue remained the legitimacy of chronic Lyme disease as a sequela of infection with Borrelia. In particular, some people contested the diagnostic criteria employed during clinical trials for the vaccine, seeing them as much too narrow and reminiscent of the orthodox view of Lyme disease as an acute, treatable, and self-limited disease rather than a disease that could become chronic.
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From page 28... ...
• Clinicians and researchers need to accept the diversity of diagnostic names and possible natural histories of a disease and to decouple disease naming and diagnosis from treatment decisions. THE HUMAN FACE OF TICK-BORNE DISEASE INFECTIONS Pamela Weintraub Pamela Weintraub is the features editor at Discover magazine and author of the book Cure Unknown: Inside the Lyme Epidemic.
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From page 29... ...
In the end he was sleeping 15 hours a day. Hardest hit was Jason, our oldest, who suffered profound fatigue and shooting pain starting at age 9, late in the summer of 1993.
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From page 30... ...
Our formerly straight-A, basketball-playing son, after contracting Lyme disease, being misdiagnosed for years, and finally receiving antibiotic therapy for 2 months, had now developed a bizarre, unrelated psychiatric disorder whose symptoms were coincidentally exactly the same as those of Lyme disease. Perhaps it is possible to believe that kind of explanation when served up by experts talking about other people's children, but it is the rare parent who would accept that decree for her own child, especially when her psychiatrist had never seen this form of psychiatric disease in his life.
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From page 31... ...
Many patients told me of doctors who insisted that a Lyme disease rash had to look like a literal bull's eye. Patients reported going to doctors with a tick bite, early flu-like symptoms, and sometimes even the erythema migrans rash, and being told to wait for a positive test before they could be treated.
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From page 32... ...
Brian Fallon of Columbia reported pain equivalent to post-surgical pain, and fatigue as severe as in multiple sclerosis. Patients can suffer stabbing, boring, shooting pains in their arms and legs, or impaired vision and hearing from damaged nerves.
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From page 33... ...
When during grand rounds or training sessions such doctors suggest that patients are malingerers, too wimpy to handle stress, middle-aged suburban women with somatoform disorder, or hypochondriacs in search of the disease du jour, they have poisoned the chance of timely diagnosis by predisposing primary care physicians to seek psychiatric explanations first. With early treatment off the table, such patients wander from family doctor to clinic to teaching hospital, from one specialist to the next, and then off the grid.
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From page 34... ...
No reasonable person would argue that the answer sought by science should be endless antibiotic treatment, even if infection remains chronic at a low level, as evidence suggests. To help these patients, medicine must acknowledge their pain, and science must deal with the complexity.
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From page 35... ...
As one family physician observed, patients with chronic symptoms tend to present as 1 sick person with 10 different diseases, whereas a patient with early or uncomplicated late-stage Lyme disease tends to present as an otherwise healthy person with 1 disease. Another participant noted the absence of an integrated model of care, resulting in the need for patients to obtain care from many different specialists.
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From page 36... ...
The goal is to move toward a definitive diagnostic tool and targeted treatment. Weintraub counseled that if the diseases can be diagnosed definitively in their earliest stage and treated effectively, then the occurrence of chronic, persistent symptoms will be eliminated or greatly reduced.
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