Spring is upon us. That means an increase in activity for the black-legged tick—more commonly known as the deer tick. This grotesque little creature carries the bacterium (Borrelia burgdorferi) that causes Lyme disease.
Lyme disease is on the rise in New Jersey, where dense forests and vegetation provide a veritable paradise for the deer tick. In its most recent data, the Centers for Disease Control says 4,598 new cases of Lyme disease were reported in New Jersey in 2009, the second highest in the nation—and an increase from the 3,214 cases in 2008. But the CDC says the incidence of Lyme in New Jersey is actually higher, because only 10 percent of Lyme cases are reported nationwide each year—in part because many cases go undiagnosed.
Lyme has created almost as much controversy as discomfort. On the one hand is the medical establishment—doctors, scientists, government agencies—which says Lyme is a relatively mild illness that can be cured with four to six weeks of an oral antibiotic. On the other, there is a highly vocal cadre of Lyme sufferers, physicians and advocates who believe that Lyme can be life altering, with symptoms lasting for years after treatment.
The battle lines are drawn over diagnosis and treatment. A bull’s-eye-shaped rash is universally acknowledged as evidence of Lyme. But if there is no rash—or if the rash has faded with time—diagnosis gets tricky. What’s more, the typical symptoms of Lyme—fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes—are easy to attribute to other ailments such as flu, chronic fatigue syndrome or fibromyalgia.
“If you have the characteristic skin rash, your doctor can diagnose Lyme disease based on visual inspection,” says Dr. Gary Wormser, chief of the division of infectious diseases at New York Medical College. “If you don’t have the rash, your doctor can diagnose Lyme disease based on your history, an examination and a blood test that determines whether you have developed antibodies to the Borrelia burgdorferi bacteria.” However, he adds, “relying solely on a test can be a problem because tests can be falsely positive, or—at the very early rash stage—falsely negative.”
It doesn’t help that the deer tick in its nymphal stage—when it is most likely to bite humans—is less than one-eighth of an inch big, making it hard to see. Once on an animal or person, it can hide in hair and folds of skin. The tick can bite, fall off and leave you unaware that you’ve been infected for days or weeks. Since most patients see a general practitioner first, he or she may not be on the lookout for Lyme, especially if the patient does not develop a rash.
Such was the case with Moira Kirby, whose life changed drastically in 1998. The East Brunswick woman, then 16, began experiencing headaches, sinus congestion and exhaustion. After weeks of misery, she finally told her mother she felt ill. “We thought maybe she had the flu,” recalls Kathleen Kirby.
For years, no physician could explain Moira’s suffering. At one point, a pediatrician prescribed antibiotics for a sinus infection, but to no avail. “Moira felt like a hypochondriac,” says Kathleen. “It’s bad enough knowing that your daughter’s physically sick, but worse having her symptoms brushed off as emotional issues.”
Finally, in July 2004, Moira was diagnosed with Lyme disease. She was treated for three more years with oral antibiotics before her symptoms went away. Still, based on Moira’s case history, some doctors would say that she never had Lyme.
Further complicating matters is how the infection works. An infected tick passes Lyme to a patient through a bite. The bacterium then works its way into a patient’s bloodstream, which can take days or weeks. So if a test is administered before the bacterium has spread sufficiently to be detected, the results will be negative.
The Infectious Disease Society of America (IDSA) and the CDC have developed guidelines for testing, as well as prevention tips, lists of symptoms and recommended treatments—all available to the public on either agency’s website. Doctors are not bound to these guidelines, but adherence is common practice. IDSA and CDC protocols also serve as guides for insurance reimbursement.
For Lyme, the IDSA recommends a biochemical test called the enzyme-linked immunosorbent assay (ELISA). If the ELISA is positive, a second test, the Western blot, is performed. Both typically are covered by insurance companies. Other available Lyme tests, including a screening offered by IGeneX, a lab in Palo Alto, California—used in Moira Kirby’s ultimate diagnosis—sometimes are not covered.
Some doctors fault this regimen, saying a positive ELISA should not be the benchmark for ordering a Western blot. “The Western blot was designed to test for Lyme-specific proteins and is a better indicator of Lyme disease,” says Dr. Lincoln P. Miller, vice chief of the section of infectious disease at Saint Barnabas Medical Center and clinical associate professor of medicine at UMDNJ.
If the ELISA and Western blot are negative, a doctor can still suspect Lyme based on a patient’s health history and symptoms. If the patient lives in a Lyme area—Morris, Hunterdon, Sussex and Burlington counties are known to have the greatest concentration of deer ticks in New Jersey—and there are symptoms, a clinical diagnosis (or medical conclusion) can be made. “New Jersey is endemic for Lyme disease and other tick-borne diseases, so clinicians should always consider these infections when they are confronted with a patient who has a fever and has potentially had contact with a deer tick,” says Miller.
Dr. David Lee, a neurologist in Medford, says he had symptoms for seven months but tested negative. He used both tests; his eighth test, a Western blot, was positive. “Did I have Lyme even though the tests were negative? Absolutely! I was a textbook patient,” says Lee. A second-degree black belt, Lee says the disease brought him to his knees, literally. He resorted to crawling around.
On the other hand, a positive test can also be misleading. “Many of the patients who come to me are looking for a second opinion,” says Dr. John Salaki, an infectious-disease specialist with Atlantic Health in Morristown. “I explain to them that the antibiotic they received has ‘killed the bug’ but the blood test result is a response of their immune system to their infection. So the test may remain positive as a marker of their exposure to Lyme, even after having received appropriate treatment for this infection.”
While the Lyme debate thrives, so do ticks in warm weather. May is Lyme Disease Month, and now is a good time to learn about prevention and detection (see box, page 37). New Jersey has many kinds of ticks that carry illnesses—such as Rocky Mountain spotted fever—but Lyme is the most prevalent.
For most cases, the IDSA’s 2006 guidelines for treating Lyme recommend a single course of antibiotics lasting 10 to 28 days. A single dose of an antibiotic may also be used to treat Lyme disease preventively in certain high-risk patients who believe they have been bitten by a tick but do not have symptoms. On occasion, a second course of antibiotics might be recommended.
Unfortunately, this standard treatment regimen does not relieve the symptoms for all patients. This could mean they were misdiagnosed (and didn’t actually have Lyme), the antibiotic was ineffective or they have long-term damage that is harder to treat.
Some in the medical community believe Lyme disease can linger for years (even after treatment) with severe consequences; they refer to this condition as chronic Lyme. Crippling arthritis, dementia, breathing difficulties and impaired vision are just some of the symptoms they attribute to chronic Lyme.
Here the controversy reaches a crescendo. The IDSA does not recognize the existence of chronic Lyme. Instead, it refers to long-term symptoms as late- or post-Lyme. And the IDSA guidelines don’t support long-term antibiotic treatment. “The IDSA’s primary goal is to ensure that people with Lyme disease get the best possible care, and that the treatment IDSA recommends is safe, effective and well-supported by the medical evidence,” says John Heys, IDSA public affairs officer.
Don’t tell that to Ewing resident Brian Pauly, who attributes his long-time ailments to Lyme. His suffering began with the appearance of a rash in 1996. Without additional symptoms, he and his doctor thought nothing of it. Three years later, however, “I started having extreme exhaustion and muscle fatigue and knew that something was seriously wrong,” says Pauly. “Several Western blots came up negative and no one suspected Lyme.” Then Pauly paid $400 out-of-pocket for a Lyme screen from IGeneX, which came up positive.
By that point, Pauly says, “I was unable to work and on Medicaid, which only paid for six weeks of antibiotics, and my health has continued to deteriorate.” These days, says Pauly, a former house painter, “I am home bound most of the time.”
Representatives of several insurance providers, including Medicaid, say the insurers follow IDSA guidelines in making decisions on reimbursement, but will cover additional medically necessary treatments on a case-by-case basis.
The Lyme Disease Association, a national advocacy group based in New Jersey, wants the disease diagnosis to be based on symptoms, with the testing serving as an adjunct rather than as the authority. “Since the test for Lyme is not accurate, you can test negative and still have the disease, and since the science shows that Lyme bacteria can live after treatment, mainstream medicine needs to rethink its obsolete ideas about Lyme disease and Lyme patients,” says Pat Smith, a Wall Township resident and president of the LDA.
On its website (lymediseaseassociation.org), the LDA refers Lyme sufferers to a directory of what it calls Lyme-literate medical doctors—or LLMDs. Smith says there are about a dozen in New Jersey. Although this is not an officially recognized specialty, the association defines an LLMD as “knowledgeable about chronic Lyme disease and often about many other tick-borne diseases.” The group also acknowledges that there have been investigations of and sanctions against some so-called LLMDs for practicing outside of protocol in New Jersey.
Some doctors treat ongoing Lyme symptoms with intravenous antibiotics, which can require the services of a visiting nurse—yet another expense that insurance might not cover. Some patients like Pauly seek alternative treatments, such as chelation, acupuncture or vitamin or oxygen therapy, which generally are not covered by insurance, but may cost less than IV treatment and nursing care.
The IDSA is pessimistic about the long-term use of IV antibiotics for suspected Lyme. “Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection,” the IDSA says on its website. “Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon.”
IDSA’s Heys adds, “Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.”
However, a 2006 study at Columbia University by Dr. Brian Fallon published in the journal Neurology concludes: “Lengthier courses of antibiotics are helpful in reducing neurologic symptoms related to chronic Lyme disease.”
And the National Institutes of Health, while stating that most Lyme patients can be cured with a few weeks of oral antibiotics, acknowledges, “Patients with certain neurological or cardiac forms of illness may require intravenous treatment.”
Talk of a placebo effect rankles Pat Smith. “While enduring tremendous pain and debilitation as Lyme progresses,” she says, “patients are subject to scorn, ridicule, ignorance and paternalism from much of mainstream medicine who reserve compassion and open mindedness for those they think are ‘really sick,’ the implication being Lyme is a disease hard to catch and easy to cure, and its victims are often faking illness.”
A further aspect of the controversy is raised by patients and doctors who believe Lyme can be passed congenitally through the birth canal. “My son has congenital Lyme and it’s a serious issue,” says one New Jersey woman, who requested anonymity. In fact, she says, four of five family members battle the disease. And she says her family is not alone. “We group of mothers have proof on paper to show that our children contracted Lyme from us. Yet, does the IDSA recognize this issue? No. Are we covered by insurance companies? No.”
Wormser, the infectious diseases chief at New York Medical College and an IDSA panel member, says research will help soften the Lyme debate. “More research on what causes lingering symptoms such as fatigue is needed in Lyme disease and other infections,” he says. “Some patients are receiving unconventional treatment—specifically, long-term antibiotics for months or years—for symptoms like fatigue. But studies show that two to four weeks of antibiotic treatment clears up a Lyme infection, and longer antibiotic treatment can be harmful. If research could pinpoint the true cause of the lingering symptoms, then better treatments might be found.”
The Lyme controversy has not escaped Congress. “It is critical that we identify biases and impediments that are constraining the science on Lyme disease and open up the dialogue to honest and transparent debate,” says Representative Chris Smith, founder and co-chair of the Congressional Lyme Disease Caucus. “The scientists who have long been marginalized, treating physicians who have felt intimidated and threatened, and, most importantly, sick patients, need our help.”
Jodi O’Donnell-Ames is a freelance writer. A resident of Titusville, she underwent successful treatment for Lyme several years ago.
Ticks live year-round, but become more active as the weather heats up. That means the incidence of bites from deer ticks begins to increase in May. Here are some tips on how to reduce your risk:
•When hiking in wooded areas, walk in trail center, not near trees and shrubs.
•Use a repellent with DEET on skin and clothing.
•Cover up! Protect your legs with long pants and keep the pants legs tucked into your socks to make it harder for ticks to hitch a ride.
•Ticks like to be warm. Once on a body, they go to underarms, behind legs, head and neck. If possible, cover these areas.
•Check for ticks regularly. If you find a suspected tick, remove it carefully and save it for identification.
•If you develop a rash, circle it with a permanent marker and take a picture. This will help determine if the rash is growing.