Marla Maples, an actress and former Mrs. Donald Trump, recently joined a growing list of the famous -- and unfortunate - who have acknowledged having serious bouts of Lyme disease.
The bacterial infection, which afflicts some 300,000 Americans annually, is transmitted by the bite of a tiny tick whose threat is growing around the world. Blacklegged ticks are now found in half of the 3,110 counties in the continental United States - double the number of 20 years ago -- and in many countries from Sweden to China. Canada, for one, is experiencing a rapidly growing disease toll as ticks move to northern climes previously unsuitable for survival.
And as ticks spread, Lyme disease claims new, prominent victims like singer Avril Lavigne, author Amy Tan, TV personality Yolanda Foster and rocker Daryl Hall, among others. Their experiences bring needed attention to a quiet plague that has long been underestimated and misunderstood, much the same way that AIDS was decades ago. AIDS was redefined in 1985 when Rock Hudson became the first major movie star to announce his diagnosis.
While Lyme does not have the same stigma as AIDS, the problems celebrities have encountered with diagnosis, treatment and lingering symptoms of Lyme disease are often their spark to speak out. Indeed, a doctor I interviewed in my Lyme disease reporting said he decided to open his practice to treating it, so frustrated was he by the inability to get care for a sick family member; so did another physician who was suffering from Lyme disease but had been misdiagnosed with multiple sclerosis. If people of means and connections have such problems, consider others deeply affected since the disease emerged in the 1970s.
The Georgia-born Maples, who calls herself a "quiet warrior" for Lyme sufferers, was diagnosed at age 22. "I had aching joints and muscles, couldn't think clearly and doctors thought I might have Epstein-Barr," she said in a press release issued by the nonprofit Global Lyme Alliance, which will honor Maples at a Connecticut gala Saturday, April 2. "I was achy and hurting and had very low energy."
In the release, Maples used a term that is at the heart of one of the most vigorous, contested and vicious debates in medicine today. "I have many friends," she said, "with chronic Lyme, and it's a tragic disease."
The U.S. Centers for Disease Control and Prevention does not dispute that Lyme can be serious - some 10 to 20 percent of Lyme disease patients experience pain, fatigue, cognitive problems and other symptoms months or years after diagnosis. But the agency, allied with several medical societies, rejects the "chronic" label. Instead, it attributes lingering problems of the tick-borne disease to a condition known as "post-treatment Lyme disease syndrome," which likely stems, it maintains, from damage to tissues and the immune system from the initial infection.
For Maples, 52 and a dancer in the current season of ABC's Dancing With the Stars, treatment entailed six to eight months of antibiotics. Medical guidelines endorsed by the CDC (which are currently being rewritten) hold that the Lyme bug is generally eradicated by just 10 to 28 days of antibiotics. But the key study on which those guidelines are based is more than 15 years old. That study and others failed to consider that many Lyme patients may be infected with other tick-borne pathogens that complicate the illness. And the guidelines do not take into account emerging research that suggests the Lyme bacteria has defenses that can evade the onslaught of antibiotics. Significantly, these treatment guidelines have been used to discipline doctors who treat Lyme disease in aggressive ways and, many patients seeking care have told me, have steered others away from treating Lyme disease at all.
Beyond this, the standard test for Lyme disease is a measure of antibodies -- no test is good at finding the Lyme pathogen itself -- and as such is highly imperfect. Hence, though the test misses perhaps half of cases in early stages and a sixth later on, it has been used to dismiss the complaints of potentially infected people.
Like many Lyme sufferers, writer Amy Tan's diagnosis came late, after a missed tick bite and four years of painful symptoms. "I could not read a paragraph and recall what it said," she wrote in a New York Times column in 2013. "The doctors I saw -- excellent ones -- never considered testing me for Lyme disease, even though I suggested it once." If she goes off antibiotics, Tan wrote, "the symptoms march back."
Tan's story is one anecdote. As is Marla Maples', whose case may have been complicated by a parasite contracted in Guatemala. To be sure, many patients are cured of Lyme disease by a quick round of antibiotics, particularly when the infection is caught early. And other people with advanced cases may not be helped with prolonged, and potentially risky, drug treatments.
But one thing is clear as the list of Lyme-infected people, famous and not, grows: Medicine does not have the answers to the problem of Lyme disease. It should not pretend it does.
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