Late last month, FOX5NY broadcast “Lyme and Reason,” a precedent-setting news special dedicated to the Lyme disease epidemic. The show was a success by many measures, including–most importantly by TV production standards–ratings wise. The strong viewership reflects a strong interest in learning more about Lyme disease. More and more, people are discovering that they know someone whose life has been profoundly affected by Lyme. More and more, people are discovering that they themselves have been living with undiagnosed Lyme for years.
Now the FOX5NY team is calling on the U.S. Centers for Disease Control and prevention to answer questions following up on a conversation between FOX5NY anchor Teresa Priolo and CDC Chief of Epidemiology and Surveillance Activity of The Bacterial Diseases Branch Paul Mead, MD.
It is notable that Mead participated in the interview, as the CDC refused an on-camera interview with Salisbury, Maryland-based WMDT 7 ABC Senior News Anchor in May for Lyme Disease Awareness Month, stating that “many of our Lyme disease experts are working on the Zika response or are out of the office this week.” (According to the CDC, 1,132 American people have been infected with the Zika virus to date, all having contracted the disease abroad, whereas over 300,000 Americans are newly infected with Lyme disease every year.)
Many people are surprised to learn that Lyme disease (or any illness, for that matter) is highly controversial and hotly debated. The CDC is at the center of the debate, to date roundly denying the existence of persisting Lyme disease, resulting in criticism. This seems strange to many if not most people, but there is in fact a precedent for the denial or underestimation of an emerging public health crisis by federal authorities–this was the basis for the bestselling book And the Band Played On, and the multiple Emmy Award-winning HBO miniseries that followed. While the band plays on, people are beginning to ask questions–and the CDC is incrementally changing its story.
In the FOX5NY special, CDC’s Mead admitted that patients who have been “diagnosed with Lyme disease, treated for Lyme disease, but may have persistent symptoms…are sometimes referred to as having chronic Lyme disease.” He stated that he prefers, in accordance with CDC terminology, “post-treatment Lyme disease syndrome,” but he did say “there’s no question that these patients exist.” This is progress, however slight, as the CDC website suggests–as do many physicians at this time who follow CDC guidelines–that patients who have persisting and increasingly debilitating symptoms address those symptoms not through maintenance of therapy for Lyme, but rather by “maintaining a healthy diet and get plenty of rest” and “share your feelings,” which leaves Lyme patients in the position of feeling pandered to and dismissed–essentially being told to live with it.
But this small, incremental progress appears to stop at admitting patients with persisting and progressing Lyme disease are actually ill.
Although the existing two-tiered Lyme disease test endorsed by the CDC has been repeatedly proven to report false negatives approximately 50 percent of the time on average, Meade ignored this in his interview and instead discussed the importance of not treating too aggressively because some tests may report false positives. Examining the worst-case scenarios of both outcomes is useful: a patient who receives a false positive may be treated unnecessarily with 3-4 weeks of doxycycline, which is likely to cause little harm. A patient who receives a false negative will receive no treatment, and the Lyme disease will persist within his or her body. CDC officials recommend that those who test negative seek out diagnosis for another medical condition, insisting that a negative Lyme disease test means the patient does not have Lyme disease–case closed. Patients who live for years with untreated or undertreated Lyme disease may end up with severe symptoms and physical neurological, arthritic, cognitive, neuropsychiatric, dermatological, and immunological damage.
I know because I am one of these patients.
About patients receiving unnecessary antibiotics, the CDC warns that antibiotic resistance is a growing problem, and contributed to by chronic Lyme patients’ use of long-term antibiotics. Despite this, physicians commonly prescribe doxycycline–the same antibiotic used to treat early stage Lyme disease–for acne and chronic urinary tract infections for months or years, and the CDC and other regulatory agencies state no concern about this practice. Also, I spoke with an antibiotics expert from the CDC a couple of weeks ago, who told me that even if human beings were to stop taking antibiotics, antibiotic-resistant bacteria will continue to emerge at an alarming rate because of the animal-farming practice of administering various classes of antibiotics to food animals every day of their lives to encourage accelerated muscle growth and to prevent infections due to overcrowded and inhumane conditions. Yet the CDC has no influence over this practice–although this practice creates serious, potentially pandemic-level zoonotic diseases that can and do “jump” from animals to human beings–which is overseen by the FDA, and the CDC therefore does not comment on the practices, instead emphasizing the need to limit antibiotic administration to human beings, including and especially who are very ill with Lyme disease.
I’ve discussed many of the complications related to diagnosing and treating Lyme disease in past articles archived at And The Band Plays On.
In an encouraging development, FOX5NY has not limited its Lyme coverage to its excellent, highly rated, and uncommonly thorough special “Lyme and Reason.” Yesterday, the news team posted responses from Lyme disease specialist Steven E. Phillips, M.D., to many of Mead’s comments on its Facebook page. You should read the entire commentary, but here are a few highlights:
Mead claimed that people with early onset Lyme typically get a rash. Phillips says this is probably inaccurate, based on current research.
Mead took exception to calling Lyme “the great imitator,” saying that that is “a term used to describe syphilis, which is a different disease.” Through a cursory review of published, peer-reviewed research, Phillips found 23 citations of Lyme as “the great imitator.” (Not discussed: the Lyme bacterium itself, Borrelia burgdorferi, is a spirochete-type bacterium that is similar in appearance to syphilis, which causes syphilis-like symptoms, including progressive skin, bone, nervous system and cognitive damage.)
Mead suggested that laboratory testing is the only reliable way to diagnose Lyme disease, dismissing the importance of patient-reported symptoms. (Read more about this from an interview with an infectious disease specialist.) Phillips emphasizes the importance of listening to patients and further quotes testimony by Mead during a public health meeting on Lyme to the state of Connecticut in 2004, in which he directly contradicts himself. Phillips writes, “If Dr. Mead has previously stated that surveillance case definitions are not to be used for patient care, then why is Dr. Mead now recommending the opposite?” Phillips goes into great detail, discussing a number of problems with existing Lyme tests that are endorsed by the CDC and its personnel.
Mead appears to recommend testing only “people who have or who are likely to have the disease.” Phillips observes that “we’d…be missing the majority of diagnoses” under this practice. (Another question: Can you imagine if the CDC recommended HIV testing only for “people who have or who are likely to have the disease”? This irresponsible practice would endanger public health. Years ago, we were all taught that “you can’t tell by looking at someone if he or she is HIV positive. To this day, the message is “anyone who is sexually active should be tested for HIV.” From the CDC website: CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine health care. About 1 in 8 people in the United States who have HIV don’t know they have it. Why, then, does the CDC recommend against Lyme disease testing except when people definitely have it or “are likely to have” it? As Phillips asks, what does that even mean? Who is “likely” to have Lyme disease? For a doctor who rejects subjective symptoms, it is strange that Mead recommends a subjective approach to diagnosing.
I don’t have space here to summarize all of Phillips’s excellent (and, frankly, common sense) rebuttals to Mead’s comments–but, really, read them yourself.
FOX5NY’s Lew Leone posted the above responses from Phillips and has called for reply and clarification from the CDC.
I’ll continue to follow this story here. In the meantime, thanks to the high ratings of FOX5NY’s “Lyme and Reason” special smart journalists and news organizations now have every reason to take a deep dive into investigating Lyme and associated diseases, as the special has proved strong viewer interest and ratings potential. To get a jump start, here are questions for investigative health reporters to pursue when addressing Lyme disease.
At this point, there is no legitimate excuse to ignore this epidemic. Telling the story of “tick season” and “how to avoid being bitten” is no more sufficient for telling this story than “practice safe sex” is a sufficient means by which to educate the public about HIV and AIDS. The public needs more and better coverage, and deserves answers to questions raised by the CDC’s puzzling story, which relies on selective research that supports its own narrative and denies the greater and growing body of research showing the highly complex and severe nature of Lyme disease.