Country singer Kris Kristofferson is one of 30,000 people who will be diagnosed with Lyme disease this year. He may be the only person to celebrate the news, however.
Kristofferson, who has suffered brain fog and spotty memory for years, had been told that his cognitive problems stemmed from the onset of Alzheimer's disease, so when doctors changed the diagnosis to Lyme disease, which is treatable with antibiotics, it was an improvement. He told Rolling Stone magazine that he's thinking more clearly after a course of antibiotics.
For most people, however, a Lyme diagnosis is bad news. The disease, caused by a spiral-shaped bacterium transmitted by ticks, has minor symptoms at first, including fever, headache, chills and a rash. These occur within three to 30 days of being bitten by an infected tick.
As the bacteria spread, they can cause an array of debilitating symptoms that can include severe joint paint, heart palpitations, facial paralysis, nerve pain, brain inflammation and problems with short-term memory, according to the Centers for Disease Control and Prevention.
Because the symptoms are so diverse, Lyme is often misdiagnosed, according to Lorraine Johnson, CEO of Lymedisease.org, a grass-roots patient advocacy group based in California. Wrong diagnoses include not just the flu or arthritis, but neurological diseases such as Parkinson's or multiple sclerosis, she said.
“Testing, unfortunately, is not very good right now, and in some cases, the only way to know (if you have Lyme) is if a treatment is working,” Johnson said.
The CDC acknowledges that while about 30,000 cases are confirmed every year, many cases are undetected or unreported and probably about 300,000 people are infected each year, at least a quarter of them children.
Because Lyme is easily cured when caught early, it's important for parents to know the symptoms and seek treatment immediately when Lyme is suspected, health officials say. Sometimes that's easy: If a child has been bitten by a tick and soon develops a round, red rash shaped like a bull's eye, it's likely that the Lyme bacterium, called Borrelia burgdorferi, is present in the bloodstream.
But a tick can fall off without anyone ever knowing it was there, and the bull's-eye rash appears in fewer than half of Lyme cases, so there's much more families should know.
A mysterious affliction of children
Lyme disease was first identified after a Connecticut mother called the state Health Department in 1975, concerned that 12 children in her community had come down with rashes, swelling and aches that resembled arthritis, according to Dr. Paul Offit, a Philadelphia physician who writes about the disease in his 2014 book "Do You Believe in Magic?"
At first, local doctors said the children had developed an autoimmune disease called juvenile rheumatoid arthritis, but as others in the town of Old Lyme developed symptoms, doctors across the nation began studying the cases.
In 1982, a bacteriologist at the Rocky Mountain Laboratories discovered that rabbits injected with bacteria found in ticks developed a rash similar to the one afflicting the children in Connecticut. National reporting of Lyme cases did not begin, however, until 1991.
Lyme begins with a rash, which can be mistaken for poison ivy, a spider bite or even a bruise. The rashes can be red, pink, or bluish-red, but they are always circular or oval. Other symptoms resemble the flu, accompanied by extreme fatigue and join pain.
A doctor can often diagnosis Lyme with a blood test that determines the presence of antibodies, but the more time passes, the more difficult the disease is to diagnosis.
The lack of biomarkers to measure has made Lyme disease a subject of controversy, particularly in cases that persist. Some people, Johnson included, say that Lyme is essentially incurable; that unless caught in the early stages, the bacteria is difficult to eradicate completely.
Others, like Philadelphia physician Paul Offit, say that "chronic Lyme" doesn't exist, and that long-term sufferers have other disorders such as depression, arthritis or bursitis. (The CDC walks a fine line, choosing to call long-term symptoms "Post-Treatment Lyme Disease Syndrome" instead of Chronic Lyme.)
In some states, the controversy has thrust Lyme treatment into the hands of lawmakers; Massachusetts Gov. Charlie Baker on July 28 vetoed legislation that would have required insurers to cover long-term antibiotic treatment in that state, which has the third highest incidence of Lyme in the nation.
Why Lyme is expanding
In the past, Lyme was thought to be confined to areas where ticks thrive: regions that are cool and wet. And in fact, the disease is most prevalent in New England and parts of the upper Midwest.
Fourteen states accounted for 96 percent of confirmed Lyme cases in 2014, according to Candice Burns Hoffmann, press officer for the National Center for Emerging and Zoonotic Infectious Diseases of the CDC. (Outside of New England, they include Virginia, Maryland, Minnesota, New Jersey, Wisconsin and Pennsylvania, and an increasing number of cases have been found in northern California.)
But ticks carrying the Lyme spirillum, the bacterium shaped like a corkscrew, have been found in more than 46 percent of U.S. counties, compared to 30 percent in 1998, according to a study published in January in the Journal of Medical Entomology.
Cases have been identified in almost every state, although CDC maps show where the infected person lives, not where he or she contracted the disease, which is not always known.
Some scientists speculate that the ticks that carry Lyme — called deer ticks or black-legged ticks — are proliferating because of warming temperatures. Ticks, which are most active in spring and fall, are more likely to survive mild winters. (An explosion in another type of tick — the winter tick — is thought to be killing off moose in New Hampshire and Maine.)
Others note that the development of subdivisions in areas that were once forested may be leading to more cases of Lyme. Squirrels and deer may run from bulldozers, but ticks remain in the grass.
What's clear is that children are particularly vulnerable to Lyme disease, and more likely than adults not to notice if a tick has burrowed into their skin. Both adult and nymphal ticks bite, and a nymph is about the size of a poppy seed, and can look like a freckle or speck of dirt on a child's skin, according to the Minnesota Department of Health.
Ticks crawl onto children in their backyards, at summer camps or while hiking on family vacations. To reduce the risk, the CDC recommends that parents check themselves and their children for ticks after being outdoors, looking specifically under the arms, around the ears, in the belly button, behind the knees and on the scalp. (If you find a tick, save it in a plastic bag, especially if you suspect it's been there a while. If Lyme is later suspected, your doctor may want to test the tick.)
Shower within two hours after coming indoors; doing so may wash away a tick that has not yet attached. As for what color clothing to wear when you're going out, the jury is mixed. Some experts say to wear light-colored clothes so you're more likely to spot a tick clicking to you. But a Swedish study in 2005 found that ticks were more likely to be found on people wearing light colors than dark.
Regardless of color, wash your clothes in hot water once you get home, and dry them on high heat for at least 10 minutes, which will kill any ticks hiding on the fabric. (The heat doesn't kill them, but the dryness will.)
If, despite all the insect repellant and showering, you still find a tick feasting on you or your child, remove it carefully with tweezers. "Never burn it," Johnson said. "You're more likely to burn yourself, and burning it will just cause it to throw up on you."
And if you want to learn more about the tick you removed, and have $50 to burn, you can order a tick report from the Laboratory of Medical Zoology at the University of Massachusetts at Amherst. (Email Imz@umass.edu).
The lab has offered tick testing for the public since 2006, and posts all its results online, so you can get an idea about how many ticks in your neighborhood are carriers of the Lyme spirillum or other pathogens. About 30 percent of the nymphs tested carry pathogens, and about 50 percent of adult ticks, said Dr. Stephen Rich, the laboratory's director.
But that doesn't mean that you have a 30-50 percent chance of contracting Lyme disease, Rich notes. "The fact that a tick is infected doesn't mean it infected the person it bit," he said.