Hats off to Fox 5 NY News for their well-researched and interesting presentation this month, “Lyme & Reason”. For decades the media has presented this issue in a well-worn format that leads the reader/viewer to decide, but this news segment is surprisingly fresh. Interviews from star sufferers and doctors cover ground you may be familiar with, but what is very different is the compassionate and supportive viewpoint.
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.
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.”
For people who have been suffering alone or feeling isolated and discriminated against this Fox news segment brings hope that mainstream may be evolving.