Expert Weighs In
As an infectious diseases physician evaluating and treating patients for Lyme disease for more than 20 years, I read with interest "Sick" [Summer], Bret McCabe's article profiling novelist Porochista Khakpour.
I understand the perspective of patients who feel unwell with medically unexplained symptoms such as pain and fatigue and may seek explanations and treatments that fall out of mainstream medicine to restore their health from chronic illness. This search can often feel empowering and offer a sense of some control in stressful situations, even if temporary. Though familiar with the frustration expressed in the article, I am disheartened when information about Lyme disease becomes distorted or presented in such an unbalanced fashion that it could directly result in bad outcomes for patients. This article did not give any perspective to the reader about highly controversial practices in the diagnosis and treatment of Lyme disease. What I see is that chronic Lyme disease or late-stage Lyme disease has been adopted as an inappropriate label by some non-mainstream clinicians for a host of difficulties such as chronic fatigue, chronic pain disorders, or mental fogginess.
Statements made in the profile do not allow readers to understand that whether Khakpour has Lyme disease or not, both the diagnostic and treatment approaches outlined are not consistent with standard medical practice or best scientific evidence-based approaches followed by most doctors worldwide for this tickborne disease. The picture painted—that Lyme disease is difficult to diagnose, requires long-term treatments including antibiotics, may require oxygen or intravenous fluids, and that less than 10 percent of cases are confirmed by the CDC-recommended two-step blood test—is at odds with scientific evidence and could be misleading.
For example, the article fails to mention that most patients with early Lyme disease have a rash known as erythema migrans or a "bull's-eye" lesion. CDC-recommended two-step blood testing is not recommended for patients who have this characteristic rash since antibodies against the organism have not yet been mounted. While true that later-onset Lyme disease patients are often unaware of any prior rash, these neurologic or arthritis presentations are diagnosed through the CDC two-step test based on IgG antibodies with high accuracy. Patients who experience prolonged symptoms such as pain, fatigue, or headaches can be confident that a negative Lyme test means they will not feel better with long-term antibiotic treatment.
Our recent clinical experience with patients who were referred with a diagnosis of what they believe is chronic Lyme disease and who have been treated with prolonged antibiotic therapy has found that nearly three-quarters of patients do not meet criteria for this infection. They have often spent weeks, months, or years under this guise, taking multiple antibiotics and alternative medicine therapies, usually at a high personal cost—both physically and financially.
Antibiotic therapy is not benign, as our normal bacterial flora can be shifted with yet unknown consequences, drug reactions can mount, or severe illness such as Clostridium difficile colitis can develop. Physicians in mainstream medicine take careful measure to do no harm to their patients and use the best scientific evidence to guide care. Six randomized, placebo-controlled studies examining whether long-term antibiotics are beneficial have found neither substantial nor durable improvement in patients suspected as not fully recovered from Lyme disease after initial treatment. These same studies have witnessed a substantial placebo effect, up to 36 percent.
Modern medicine remains without sufficient knowledge of the basis of illness in many areas, and we should remain skeptical while embracing change when high-quality data suggest a rationale. Patients should be leery of "chronic Lyme disease" diagnoses and treatments that do not have solidly researched foundations. While waiting for breakthroughs and answers, patients such as Khakpour certainly deserve empathy and direction to cope with their illnesses, whether called "Lyme disease" or by another name that perplexes both clinicians and patients.
Paul G. Auwaerter
Sherrilyn and Ken Fisher Professor of Medicine Johns Hopkins University
Thank you for publishing "Soap Suds Radio" [Alumni, Spring], a remembrance of the Hopkins radio station WJHU. In a letter to the editor about the article [Dialogue, Summer], Peter Verheyen added some terrific recollections of WJHU but could not recall the name of the full-time WJHU staffer. The Hopkins employee who administrated WJHU was my mother, Irene Vanger, then Irene Chamish. She was a Baltimore native who had a long career in radio before landing at WJHU, including being a producer at WBAL and running the live coverage of the Preakness. She was a member of the team that started the 98 Rock radio station, transforming the failing WBAL-FM into a tremendous success that continues to this day.
Irene Vanger accomplished this in the 1960s and 1970s, a time when it was very tough for women to make progress in the industry. After her time at WJHU, Irene went on to Johns Hopkins' fledgling Instructional Television Department, where she did groundbreaking work in distance learning via video link. I am sad to report that my mother died in 2016.
Irene loved and supported all the DJs and announcers at WJHU, whether they were into classical, jazz, folk, ethnic, punk, or whatever other genres the station put out over the airwaves. She often took a DJ shift herself, playing her beloved Broadway show tunes.
Thanks to my mother's example, I also became involved at WJHU and went on to a broadcasting, production, and performance career after graduation. WJHU's 10-watt broadcasting years were a stunning time of creativity and camaraderie. Thank you for highlighting this important slice of Hopkins history.
Leanna Chamish, A&S '87
Honor Their Sacrifices
I was disturbed to read your story about the dedication of the Grassbaugh ROTC Hall ["ROTC Hall Dedication," Campus, Summer]. I have no intention of diminishing the sacrifice of Capt. Jonathan Grassbaugh, Engr '03. He is and forever will be an American and Johns Hopkins University hero. But to honor a single alumnus who has made the ultimate sacrifice in the service of his country certainly diminishes others who have gone before (and will follow). A much better naming choice would be ROTC Memorial Hall to honor all graduates who have fallen.
Ernest B. Miller, A&S '64
San Luis Obispo, California
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