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No one knew why 16-year-old Erica Brand's hoarseness persisted. As a high school student dreaming of a singing career who planned to audition for a college music scholarship, the Valley Cottage, New York, teen saw a number of doctors and voice specialists. Many dismissed her problems as psychosomatic or said she was simply straining her vocal cords. But Erica's mother, Jane Kelman, a psychiatrist, suspected otherwise.
Erica was put on steroids for vocal cord inflammation but quickly developed rashes, pain in her joints, and severe dizziness. Checked for Lyme at her mother's insistence, Erica tested negative. One doctor dismissed her problems as "a weird virus" and suggested waiting six weeks to try anything else.
But while watching her daughter's condition deteriorate, Kelman knew time was their enemy. After about two months, she found a Lyme specialist who made a clinical diagnosis based on Erica's symptoms and immediately put the teen on antibiotics. Within two and a half weeks her symptoms started to lift.
It was several months before Erica was able to return to school, and the delay in treating her Lyme disease left her vocal cords permanently damaged. Erica, now 26 and a part-time piano teacher, computer researcher, and writer, can no longer sing or speak above a whisper.
It's been more than 30 years since Lyme disease was first identified in the northeastern Connecticut town for which it is named and linked to tick bites. Today it's the commonest tick-borne illness in the United States. Nearly 24,000 cases were reported to the Centers for Disease Control and Prevention in 2005, almost triple the number reported in 1993. Studies show the actual figure could be up to 10 times higher (240,000 cases a year).
And just as the illness is becoming more widespread, it is also becoming more controversial. As in Erica's case, doctors vary on how to identify the presence of Lyme. Treatment has also become a matter of debate, with some doctors even jeopardizing their careers to get patients the help they need.
How worried about getting Lyme should you be? That depends on how careful -- and lucky -- you are. Most ticks don't carry the disease. Even if you're bitten by an infected tick, removing it within the first 36 hours makes your odds of getting it slim. If you do contract Lyme, how easy it is to cure depends on how soon it's treated. Here's the latest on protecting yourself and your family.
There are hundreds of tick types, but Lyme is primarily spread by the Ixodes species (also called black-legged ticks). These blood-sucking parasites live in grassy and wooded areas, including yards where there are shrubs, brush, hanging vines, and woodpiles.
Most people get Lyme in late spring to midsummer, when they brush against grass or brush where ticks cling. Immature ticks (called nymphs), pale tan-colored creatures the size of poppy seeds, attach themselves to small animals such as mice or squirrels -- as well as to humans and pets. A tick can stay attached for as long as a week before it drops off. You may not know you've been bitten because the tiny ticks often hide in the scalp or body folds and the bite doesn't hurt while the tick is feeding.
Mature ticks (the size of sesame seeds) feed on deer and other large animals and are active in October and November. They can also transmit Lyme, but because they're bigger, they're likelier to be found and removed in time.
Other tick species are not thought to transmit Lyme, though they can transmit other illnesses.
If you suspect you've been bitten by an Ixodes tick, see your doctor as soon as possible, since prompt antibiotic treatment almost always eradicates Lyme. (Try to bring the tick with you.)
The first, or early, stage of infection occurs about seven to 14 days after a bite and if left untreated may last for weeks. A bull's-eye rash (Erythema migrans) of about 2 inches or more in diameter, with a central dot surrounded by clear skin and a red ring, is often the first sign. But a Lyme rash can also be an extensive red blotch with no ring. Either rash may be accompanied by flu-like symptoms, including fever, stiff neck, and aching muscles and joints. Many people don't get a rash -- or don't notice it, however.
Left untreated, the Lyme bacterium multiplies and is carried by the bloodstream to the joints, heart, and central nervous system, among other areas. This second, "early disseminated" stage, which appears three to eight weeks after the initial bite, can result in heart palpitations, brain swelling, facial paralysis, swollen joints, and other symptoms.
If the first or second stage isn't caught and treated -- or if treatment doesn't eliminate the bacterium -- late-stage Lyme can occur anywhere from months to years after the initial bite. Previously active, vigorous people may develop arthritis, joint swelling, extreme fatigue, depression, or memory loss. They may have seizures or dramatic mood swings, even psychosis. But because not all experts are on the same page about whether their problems are due to Lyme or something else, people suffering from such late symptoms may find it difficult to get help.
It is precisely because the symptoms of advanced Lyme resemble those of a number of other illnesses (see "Is It Really Lyme Disease?") that the diagnosis controversy erupted. One group, the Infectious Diseases Society of America (IDSA), a professional organization of physicians and other experts, recently issued updated guidelines for diagnosing Lyme that require the presence of the bull's-eye rash or confirmation from two blood tests -- the ELISA (enzyme-linked immuno-assay) test or the Western blot test -- plus the presence of indisputably Lyme-caused symptoms, such as facial palsy or arthritis.
But another group, the International Lyme and Associated Diseases Society (ILADS) says the guidelines exclude many people with Lyme. ILADS doctors claim that only about half of patients have rashes. The group also says that the ELISA test misses 35 to 50 percent of Lyme cases, and the Western blot misses 20 to 30 percent. These physicians use additional tests to see whether patients who tested negative for Lyme on the commercially available tests show evidence of it.
What's more, a Lyme-carrying tick may transmit other infections at the same time, such as malaria-like babesiosis, HGA (human granulocytic anaplasmosis) and the bacterial infection bartonella. "Lyme disease is really a complex of tick-borne diseases," says Raphael Stricker, MD, a San Francisco Lyme specialist and president of ILADS. These other illnesses, called co-infections, may require different tests and treatments.
Most experts agree that Lyme can be cured in the first stage with oral antibiotics, typically taken for no more than 28 days. The IDSA guidelines allow doctors to give one preventive dose (one pill) of antibiotics within 72 hours to people bitten by a deer tick in regions where Lyme is prevalent since it would be too soon for symptoms to appear.
The problem is what to do when Lyme isn't found early and oral antibiotics don't cure symptoms. This is extra-complicated for patients who never got a rash and tested negative on blood tests but whose physicians believe they do indeed have Lyme.
The IDSA guidelines advise against using the long-term or repeated courses of antibiotics that some doctors have been prescribing for intractable cases -- often using intravenous medication. Eugene D. Shapiro, MD, professor of pediatrics, epidemiology, and investigative medicine at Yale University School of Medicine and one of the authors of the guidelines, says that "objective, evidence-based" research shows that long-term antibiotics "are no better than placebos." He cautions that using antibiotics long term poses "substantial risks," including destruction of bone marrow and liver damage as well as selecting for antibiotic-resistant superbugs. Symptoms that last beyond the standard Lyme treatments, or that are present in the absence of a Lyme-positive blood test, aren't due to Lyme and should be treated with pain medication or other remedies, he says.
The physicians who belong to ILADS disagree. "Doctors should be able to use their own clinical judgment and skills when it comes to treating or retreating Lyme," says ILADS board member Daniel J. Cameron, MD, a Mount Kisco, New York, internist and epidemiologist at Northern Westchester Hospital. "But we're now not allowed the option." In fact, some doctors have been disciplined by state medical boards.
Meanwhile, patients may be unable to get reimbursed for nonstandard treatments, because insurers often base coverage on IDSA protocols. Pat Smith, president of the National Lyme Disease Association, an advocacy group, says numerous patients have already been denied reimbursement.
That's what happened to Jan Evans, a 58-year-old Kinston, North Carolina, secretary who grew up raising rabbits on a farm in an area where there were many deer. She remembers getting tick bites but doesn't recall ever having had a rash. When she was about 12 (long before scientists had identified Lyme disease) she had an unexplained numbness in one arm that eventually went away. In her late 20s she developed joint pain and severe headaches. Medical tests, including x-rays, CAT scans, and MRIs, found nothing. Over the years her symptoms, including unexplained fevers, severe muscle pains, numbness, tingling and mental confusion, worsened. In 2005 she got a Western blot test after her sister, a nurse, suggested her illness could be Lyme. Evans tested negative.
Still, in 2006 she went to a Lyme specialist who did a PCR (polymerase chain reaction) diagnostic assay, an alternative test of DNA. It found no Lyme but did identify a Lyme co-infection called Mycoplasma fermentans. Evans was given IV antibiotics -- a costly procedure -- but decided to stop after the first 28-day treatment, which she understood would be covered. Her insurance company denied her $15,000 claim.
Evans is appealing the decision. "Having to stop has caused my symptoms to return," she says. Meanwhile, her doctor, Joseph Jemsek, MD, of Huntersville, North Carolina, had his own battle with that state's medical board, which suspended his license for one year for prescribing long-term antibiotics for Lyme. The suspension allows him to practice medicine while meeting certain stipulations.
The medical suspensions have gotten politicians involved: Rhode Island passed a bill in 2002 protecting physicians who treat Lyme disease with long-term antibiotics from having their licenses suspended. California has passed a similar law. And the Connecticut attorney general is investigating the IDSA for antitrust violations in developing the guidelines (the process included no ILADS physicians or patient representatives), stating that its restrictions on care for chronic Lyme might be harmful.
The bottom line for patients? If the treatment your internist or family practitioner has given you doesn't seem to have eliminated symptoms, check out a Web site such as Lymediseaseassociation.org or Lyme.org.
Meantime, a bill reintroduced into the U.S. House of Representatives this January by New Jersey Congressman Chris Smith asks for $100 million for research, education, and prevention over five years. And Columbia University was scheduled to open the nation's first Lyme disease and tick-borne diseases center in April of this year.
The only effective way to prevent Lyme is to avoid being bitten. A vaccine that was approved in 1998 was pulled from the market in 2002 because of reports of Lyme-like arthritic and neurological side effects. Most of us are familiar with the standard warning to wear long-sleeve shirts, long pants tucked into socks, and a hat. Other precautions:
Originally published in Ladies' Home Journal, June 2007.