On Thursday, June 30, New York’s FOX 5 news proved there is great public interest in learning more about the complexities of Lyme disease.
Despite airing at 10:30 p.m., the “Lyme and Reason” special drew strong ratings as it delved into issues surrounding Lyme disease that few news programs ever do, including the fallibility of diagnostic blood tests, common misdiagnoses, potentially fatal heart complications—including an interview with Neil Spector, a medical doctor who was told by other physicians that his failing health was little to worry about—and then required an emergency heart transplant to save his life.
New York is one of the “ground zero” areas in which Lyme disease is endemic, with New York City only a little over 100 miles from Lyme, Connecticut—the town where Lyme was first discovered and described. Yet, as Susan Green, legislative council for NatCapLyme, told FOX5NY, “this disease is in every state in the country…it is not selectively a northeastern disease.” NatCapLyme is the primary community resource for Lyme disease patients in one of the country’s most hard-hit areas, the Washington, D.C. region.
Lyme, in fact, is an epidemic, with the the U.S. Centers for Disease Control and Prevention (CDC) reporting over 300,000 new cases contracted by American people every year. This statistic was revised from an estimated 30,000 in 2013—yet the FOX5NY special is the first of its kind. Why?
Because, as discussed in the special, there is great resistance from medical authorities—particularly the CDC and the Infectious Diseases Society of America (IDSA)—to acknowledge abundant current scientific evidence and countless patient reports of Lyme symptoms that persist and worsen following their recommended maximum 28 day treatment with antibiotics.
The CDC has been notoriously quiet about Lyme disease, focusing almost exclusively on prevention (avoiding ticks, recognizing the bullseye rash that many Lyme patients never see) and avoiding conversation about poor diagnostics, newer research than that on which the IDSA treatment guidelines are based, and complexities relating to persisting Lyme symptoms. Emily Lampa, lead investigative reporter for a Salisbury, Maryland ABC news program, revealed that she was refused an interview by anyone at the CDC in May, for a story she produced as part of Lyme Disease Awareness Month.
FOX5NY had better luck in securing a CDC interview. Paul Mead, chief of epidemiology and surveillance activity of the Bacterial Diseases Branch of CDC, confirmed in an on-camera interview that the Center continues to endorse the two-tiered ELISA and Western blot blood diagnostics that, as Susan Green described, have been proven to result in false negative readings for at least half of patients who are tested. Mead, on behalf of CDC, maintains that the two-tiered test is “reliable” in later stages of Lyme; however, as Green discusses at length in the above interview, this is not the case for many patients, for a number of reasons, one of which has to do with the many species and strains of Borrelia bacteria that may cause Lyme or “Lyme-like illness,” but which never will result in a positive Lyme disease blood test.
(NatCapLyme has facilitated the passing of laws in Virginia and Maryland requiring that doctors inform patients about the failings of these tests, which usually are not explained to patients by doctors.)
Although Fairfax, Virginia-based George Mason University and Ceres Nanosciences recently created a urine-based Lyme disease test that was shown in a trial to be more accurate than the two-tiered Lyme disease test, the CDC still only endorses the traditional two-tiered ELISA + Western blot testing process. “In general,” Mead said, “CDC recommends that people rely on FDA-approved tests for the diagnosis of Lyme disease.”
I contacted the CDC Clinician Outreach and Community Activity office to inquire about the urine-based test and received this reply from someone named Will (no last name was given):
…we have not evaluated the Nanotrap(r) Lyme Antigen test. CDC supports the development of new testing methods for Lyme disease and encourages laboratories to submit their newly developed tests to the Food and Drug Administration (FDA) for clearance in order to ensure that the highest quality diagnostic tests are available.
(It is worth noting that the average cost to secure FDA approval of a new medical device is $24 million, which can present delays and sometimes even indefinitely prohibit creators of better and more accurate devices from securing FDA approval.)
According to LymeDisease.org’s Lorraine Johnson, the CDC did not officially reject non-FDA approved diagnostic tests until 2013. Johnson writes:
The CDC does not have jurisdiction over the FDA, of course. And, the FDA permits the marketing of tests that do not have FDA approval. Many tests on the market today fall in this category. What the announcement means is that physicians and insurers will be less likely to accept non-FDA approved tests. This means that patients who want these tests will need to pay for them out of pocket. It also means that the entrenched lab tests that simply do not work will have more of the market to themselves.
The Meade interview presents a perplexing dichotomy. Meade states—consistent with CDC’s messaging—that the concern about Lyme disease specialists treating patients who have persisting symptoms is that “there is no evidence” (other than over 300 peer-reviewed, published articles) for Lyme bacteria that persist after short-term antibiotic treatment, and that patients are “treated with therapies that are sometimes harmful. There are cases of patients who have died as a result of long-term therapies for Lyme disease.” When citing these cases, the CDC never mentions, for example, cancer patients who are treated with chemotherapy for years and succumb to the illness, or to the poisonous treatment, anyway. The conversations, which sometimes invoke one or two anecdotes of patients who die, for example, from an infected IV port used to administer antibiotics, don’t discuss that across the board, hospital mistakes are the third leading cause of deaths in the United States. The publisher of the cancer journal Oncology states that “infections are among the most common, potentially serious complications of cancer and its treatment“—yet, the CDC doesn’t recommend against chemotherapies for this reason, or because chemo often fails and is toxic to the body. The CDC and IDSA frequently use this argument against treatment Lyme disease patients.
Similarly paradoxical, CDC’s current priority of raising awareness about and preventing the spread of Zika virus among the American population focuses—as the CDC should—on protecting the overall public health. Yet, CDC’s approach to Lyme disease often is to refuse interviews that would serve to inform the public, to deny an abundant and growing body of evidence for persisting Lyme disease, and rather than focusing on raising awareness and containing the Lyme epidemic—the fastest-spreading bacterial infection in the country—CDC personnel and publications consistently cite chemotherapy-like risks to individual patients from treatment instead of, as it does with Zika and most other infectious diseases, focusing on containing the greater public health threat. This makes no sense.
FOX5NY’s Teresa Priolo asked Meade about patients who are misdiagnosed with multiple sclerosis, ALS and other diseases and succumb directly or indirectly, and then are diagnosed after death with Lyme disease.
“Reports of cases of Lyme being mistaken for other diseases are really quite rare,” Mead said. “Some…patients were actually seriously harmed by being given a diagnosis and long-term therapy for Lyme disease when in fact their underlying condition went untreated.”
I can only speak anecdotally, but my story in a nutshell: I was diagnosed with and treated for Lyme in 1997, at age 18 or 19. Undertreated. By age 33, doctors thought I might have multiple sclerosis or possibly even ALS. Tests were inconclusive but ruled those out. At 36, I was re-diagnosed with Lyme, as well as bartonella and babesia coinfections. After approximately six months of antibiotic treatment, I was no longer semi-disabled. My recovery has continued.
Last month, I met a young woman in her early 30s who was born ill. She was diagnosed at a young age with multiple sclerosis and treated for it. She was then un-diagnosed with MS and instead diagnosed with Crohn’s disease, and treated with biologic medications. She was given a partial colectomy and treated with biologic medications that have destroyed her body. She could not turn her head without turning her whole body, and I heard her bones crack every time she moved a joint. She was ultimately diagnosed with Lyme disease, and it was determined that she was most likely born with it.
I have met scores of people who were initially diagnosed with MS or another condition and then were found to have Lyme disease, underwent treatment, and recovered a great deal of wellness as a result. Based on my personal experience and my personal encounters, this is not a rare occurrence. With approximately 10,400 new cases of MS diagnosed each year, according to the CDC’s own data, Lyme disease is 30 times more prevalent—and yet physicians continue to be encouraged to look for something, anything, other than Lyme disease when patients with symptoms that could be attributable to Lyme disease present. This is, by way of great understatement, nonsense.
Thank you, and congratulations, to FOX5NY, Teresa Priolo, and all others who are making real efforts to inform the public about this epidemic. This type of coverage is overdue, but it’s more necessary than ever. For journalists who haven’t scratched the surface of the complexities and controversies surrounding Lyme disease, read through these questions and start doing your homework. The success of FOX5NY’s special report is evidence that the public is hungry for information about Lyme disease, recognizing the threat through word of mouth that cannot be contained.
Lyme is today’s greatest medical mystery, and for any journalist with investigative instincts and an interest in uncovering the truth, the Lyme story is only beginning to be told.