Why Lyme Disease Gets So Complicated

There are some medical conditions that are harder to diagnose or treat than others, and more and more people are realizing that Lyme disease is among them. From the various symptoms, ranging from subtle to severe, to other, closely related infections, there is a whole world of confusion surrounding a Lyme disease diagnosis and treatment.

Sometimes Lyme Disease Isn’t So Simple

The disease is caused by the bacterium Borrelia burgdorferi. In the Northeast and the Midwest, B. burgdorferi is transmitted by the bite of a black-legged tick, Ixodes scapularis. (In the Western United States, a related tick, Ixodes pacificus, prevails, and in Europe the main vector is Ixodes ricinus.)

Those facts are undisputed. But nearly everything else about Lyme disease—the symptoms, the diagnosis, the prevalence, the behavior of the borrelia spirochete after it infects the body, and the correct approach to treatment—is contested bitterly and publicly. Even the definition of Lyme disease, and the terminology used to describe it, has fuelled years of acrimonious debate.

For many people, though, the clinical situation is far more complicated. Some who have been infected with borrelia don’t notice the rash. Others—up to a quarter of those with Lyme—never even get one. Most troubling, some patients who are treated continue to suffer from a variety of symptoms long after their therapy has ended. Nobody really knows why they fail to get better. Infectious-disease experts refer to the phenomenon, which can affect up to twenty per cent of patients, as Post-Treatment Lyme Disease Syndrome.

Many of these patients say that medical officials pay little attention to their persisting symptoms, and that Lyme disease is anything but easy to treat or to cure.

Moreover, at least four pathogens, in addition to the Lyme bacterium, can be transmitted by the black-legged tick: Anaplasma phagocytophilium, which causes anaplasmosis; Babesia microti, which causes babesiosis; Borrelia miyamotoi, a recently discovered genetic relative of the Lyme spirochete; and Powassan virus. Some of these infections are more dangerous than Lyme, and more than one can infect a person at the same time. Simultaneous infection, scientists suggest, may well enhance the strength of the assault on the immune system, while making the disease itself harder to treat or recognize.

“I am not sure why we act as if we know the answers,” Brian Fallon told me. Fallon, a psychiatrist who has studied the neurological impact of Lyme for years, is the director of the Lyme and Tick-Borne Diseases Research Center, at Columbia University. “The evidence that something more complex is going on is tantalizing and substantial.”

– via The New Yorker

Part of what complicates the world of Lyme disease is that the statistics are consistently skewed, giving inaccurate state and national numbers for Lyme disease cases each year. This means that a condition that affects far more people than most realize, doesn’t get the funding or attention that many other diseases do. Less funding and research means that the high rate of misdiagnosis and public confusion only continues. Below you’ll see a great breakdown of what the situation really looks like.

The Struggle To Understand The Scope Of Lyme Disease

I spent most of last week at the International Conference on Emerging Infectious Diseases, a 1,500-person meeting of epidemiologists, physicians and microbiologists that is co-sponsored by the Centers for Disease Control and Prevention and the American Society for Microbiology.

I came away thinking we ought to be a lot more worried about ticks.

Some people already are, of course. The CDC has redrawn its maps of Lyme disease, the disease most commonly carried by ticks, to display how rapidly risk of it is rising in the northeastern US: 260 hot-spot counties now, compared to 69 20 years ago. (Two years ago, the CDC raised its estimate of the number of new Lyme infections that occur each year in the US from 30,000 to 300,00—10 times as much.)

What’s at stake in the tickborne disease explosion flagged by the ESA and displayed in the ICEID presentations isn’t only Lyme disease. It is also other diseases carried by ticks—anaplasmosis, babesiosis, ehrlichiosis and more—that are less well-known and, because of that, often not detected or treated.

A group of researchers working at the Minnesota Department of Health suspected that the number of tickborne diseases recorded in Minnesota was too low. That’s important, because the state’s count of infections becomes part of the national record, and those numbers determine whether tick-related diseases become a priority for funding. To test the state’s record, the team randomly selected medical charts from hospitals and clinics in a Minnesota county where Lyme and its brethren are common, and checked them for billing codes that would indicate whether the patient was tested for or diagnosed with a tickborne disease. The result: There were three times more cases of Lyme, anaplasmosis and babesiosis occurring than the state knew about.

– via National Geographic

Have you or someone you love been diagnosed with Lyme disease? What has your experience been like?