A lot of us are plagued with vague but unpleasant symptoms like fatigue, a sore throat, trouble sleeping, headaches, depression, or back pain. This is obviously no fun, and people want solutions. In recent years, an increasing number of people with these problems have been diagnosed with chronic Lyme disease. And they have found that getting treatment is not easy. Patients have fought their insurance carriers, trying to get them to pay for the long courses of antibiotics that they have prescribed. Lawmakers have tried to intervene: legislation to mandate coverage for chronic Lyme disease treatments has been proposed in Maryland, Pennsylvania, Connecticut, Massachusetts, Minnesota, New Hampshire, Vermont, Maine, and New York. Connecticut’s attorney general even brought an antitrust suit against the Infectious Diseases Society of America, because it refused to include extended antibiotic therapy for persistent infection in its guidelines (giving cover to insurance companies that wanted to reject claims). This is an awful but familiar story, right? Insurance carriers trying to push costs onto their customers is nothing new. But in this case, the insurance companies are probably in the right for once.
Lyme disease, of course, is real. We all know to beware of ticks when we are walking in the woods, and to watch out for the bull’s eye rash around a bite that means Lyme disease. The disease is caused by a bacterium called Borellia burgdorferi that ticks carry. A course of antibiotics, and afterwards all is fine. But what if you miss the early signs and symptoms and don’t treated? You might go on to develop a chronic infection, complete with early onset arthritis, heart problems, and Bell’s palsy. Lately, though, the concept of chronic infection has broadened. Some doctors are diagnosing patients with chronic lyme disease even if they don’t remember ever having a tick bite or a bull’s eye rash. And even if there are no signs of infection specific to Lyme disease. What is going on?
The waters around Lyme disease started to muddy in the 1980s, when a group of researchers reported that you could get Lyme disease, receive prompt treatment, and still go on to develop chronic infection. The worst thing was, these patients had no antibodies to B. burgdorferi! That means that if you tested these patients for Lyme disease, they would be seronegative–it would look like everything was fine. Although later research showed that serological tests actually were reliable for diagnosing late-stage Lyme disease, the ball was already rolling.
A relatively small number of doctors are very active in diagnosing chronic Lyme disease. They call themselves “Lyme literate.” Many of them are members of the International Lyme and Associated Diseases Society, and a number have been sanctioned, reprimanded, or even convicted of charges related to fraud and malpractice. Since they argue that you can have a longterm infection and still remain seronegative for infection, they can diagnose pretty much anyone with chronic Lyme disease. If you visit one of these doctors complaining of relatively vague and non-specific symptoms, such as pain, fatigue, or neurocognitive issues, you will probably leave with the diagnosis. Sometimes it’s even backed up by tests performed by laboratories that specialize in providing positive results by using methods that don’t adhere to official guidelines.
What are the drawbacks of getting treated for chronic Lyme disease when you don’t have it? First, of course, someone is taking your money to treat you for something you don’t have. And these treatments can get expensive! Second, and probably worse, the treatments have side effects. Serious ones. Some doctors have been infecting patients with malaria, which they say will get kill B. burgdorferi. Others are injecting them with bismuth, and sometimes the results aren’t pretty. The lucky patient will get a long course of antibiotics, but even this is serious business. Allergic reactions to the antibiotics, infections at the site of the I.V., and other complications have resulted in the death of patients. And in one unpublished study, a fifth of the patients who received this type of treatment had serious adverse events, usually related to the I.V..
People plagued with symptoms that no one can nail down are desperate for answers. Many visit doctor after doctor with no success. Then, they read a compelling story like this one and wonder if being treated for chronic Lyme disease could transform their lives too. Or they see a documentary like Under our Skin and become convinced that Lyme disease is responsible for their symptoms. When most of us want to learn more about a topic, our first stop is the Internet. Unfortunately, many of the activist groups lobbying on behalf of chronic Lyme disease have bland names and professional-looking websites that lead people to think they are sources of unbiased information, like the Lyme Research Alliance, the Lyme Disease Association, and the California Lyme Disease Association.
One study of patients seeking help for chronic Lyme Disease found that many suffered from psychiatric problems–which probably explained their symptoms. Psychiatric problems can be treated, but most of us don’t want to hear that we have them. It’s more appealing to think a course of antibiotics is the answer. Even the suggestion of a cure is often enough to make chronic Lyme disease patients feel better; one randomized controlled trial found that roughly 40% of the patients assigned a placebo improved. Just the belief that they’ve finally identified their problem and are getting help makes a difference. In the end, chronic Lyme disease is just another example of the way we attempt to transform psychological problems into something more manageable, something with a clear external cause and a straightforward solution. It’s a shame that we can’t provide this kind of relief without made-up diseases and harmful, unnecessary treatments. If it weren’t unethical to deceive patients, this seems like a case where prescribing sugar pills could make a big difference!