As with most medical conditions, media stories related to Lyme disease generally take one or two of three directions:
- General overview and prevention
- Human interest (frequently involving a celebrity story)
- Occasionally (most often local media in areas affected severely by Lyme disease) stories relating to Lyme disease politics and controversies
But Lyme disease is not a typical medical condition. A number of characteristics make coverage complex, but also offer opportunities for provocative, responsible journalistic investigation.
- According to the CDC, Lyme (Borrelia burgdorferi) affects over 329,000 new Americans each year.
- Certain regions of the country, particularly the Northeast and the Great Lakes regions, have high prevalence of Lyme disease transmission. However, Lyme has been documented in the majority of the country and is a growing, emerging threat.
- “Lyme disease” is entirely unique among diseases in that the common term refers to a number of different possible infections transmitted by ticks.
- Borrelia burgdorferi, a spirochete-type bacterium similar to syphilis that causes syphilis-type symptoms, is the infection directly associated with the term “Lyme disease.” When a patient is tested for Lyme disease, the test looks for antibodies to Borrelia burgdorferi.
- Other Borrelia species of bacteria, including B. mayonii, B. miyamotoi and others, are now known to cause Lyme or Lyme-like diseases. Lyme tests do not detect these species–so a patient infected with these will always come up negative in a Lyme disease test.
- Bartonella sp., commonly known as “cat scratch disease,” frequently occurs among people who test positive for B. burgdorferi and in ticks that carry Borrelia. It can cause stretch mark-like rashes, fever, and severe neurological dusfunction among infected people. Lyme disease tests do identify Bartonella infection, and physicians rarely test for Bartonella.
- Babesia species protozoa are reported among many people who have Lyme disease. The malaria-like parasite which infects red blood cells is becoming more common in the same regions in which Borrelia is prevalent, and it causes symptoms similar to those of malaria. Babesia has been identified as a severe and growing public health threat, in part due to documented fatal transmissions through donated blood–recalling the early days of the AIDS epidemic. Lyme disease tests do not identify babesia infection, and symptoms frequently are too “under the radar” for physicians to test.
- A number of other coinfections occur with some frequency among those diagnosed with Lyme disease; however, only Borrelia burgdorferi is commonly called “Lyme disease,” and Lyme disease diagnostics only test for Borrelia burgdorferi, causing many of these infections to go undetected.
- Because of the multiple infections and because Borrelia and other tick-transmitted infections can affect many organ and other bodily systems, some Lyme disease advocates recommend assigning the term “Lyme disease” only to Borrelia but instead using the term MSIDS—Multiple Systemic Infectious Diseases Syndrome–to identify these tickborne infections to address complications and confusion. Presently, the term “Lyme and associated diseases” is commonly used by those who acknowledge coinfections.
- Lyme disease, unlike most other diseases, is controversial. Both the science and the politics are complex, and responsible journalists who cover the disease should be aware of and address the debate with as little journalistic bias as possible, and should conduct due research and check facts before reporting. Unfortunately, this does not always happen.
- Journalists should bear in mind that their reporting has direct consequences on reader/viewer behaviors and, ultimately, on public health. To understand why the role of journalism is so vitally important, reporters should read And the Band Played On, a bestselling, award-winning book by a late San Francisco Chronicle reporter named Randy Shilts who documented the early days of the emerging HIV/AIDS crisis and describes how lack of attention from the news media–except when celebrities with AIDS were identified–and apathy from the federal government contributed not only to deaths but also to the rapid spread of the disease.
- We contend that history is repeating itself right now with the Lyme disease epidemic, and encourage journalists to perform greater-than-usual investigation into this phenomenon bearing in mind that journalism as an overall institution could have advanced controlling HIV/AIDS had it listened to those who said the mainstream story was not the full story, and that the disease needed immediate and serious attention.