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Ticks Dig Us

Concerns and controversies about Lyme disease and its long-term effects

Around the time my wife and I were bitten by the house-hunting bug, I got bitten by another type of bug. We were looking at real estate in Litchfield in the summer of 2005 when I noticed a bull’s-eye rash on my back. My doctor in Manhattan said it was likely the result of a spider bite.

Weeks later, after I’d begun to suffer from headaches and flu-like symptoms, I visited a doctor in Connecticut. He listened to me reel through my symptoms, took one look at the telltale rash, and immediately wrote out a prescription for a few weeks’ worth of doxycycline, the antibiotic recommended by the Infectious Diseases Society of America (IDSA) for treatment of an illness I would have never suspected—Lyme disease.

I never saw the deer tick that bit me—not uncommon since the tick’s bite is rarely felt and, if the parasite is in its nymphal stage, the tick is no bigger than a pinhead and very hard to detect. I had a blood test for the disease, which came back positive, though my doctor explained that such tests are notoriously unreliable. Even a test that comes back negative is far from conclusive, so doctors typically use the test alongside other clinical symptoms to make a diagnosis.

I was actually lucky to have developed the bull’s-eye rash—not all Lyme victims do. If not attuned to Lyme and its symptoms, those who are infected may go for some time without receiving treatment, allowing the bacteria to proliferate in their body, which can have catastrophic results.

By the end of my first round of doxycycline, I had read extensively about the disease’s potential long-term effects—debilitating arthritis, chronic joint inflammation, neurological disorders, impaired memory, and heart-rhythm irregularities, to name a few. I was tested again as a precaution and, as if to confirm my fears, the test returned positive, so I embarked on another round of antibiotics. Finally, I tested negative and have remained healthy since, rendering the whole experience a fairly conventional brush with a disease that, for some, is far from conventional.
 

Growing Threat
In 2009, there were nearly 40,000 reported cases of Lyme disease, according to the Centers for Disease Control, but the CDC estimates that the number of unreported cases could be up to 12 times higher. That means almost half a million Americans could be infected every year, many of whom are not getting treatment.

Connecticut—where the disease was first identified in the town of Lyme—currently has the highest rate of infection in the nation. Many towns in Connecticut, as well as some other badly infested communities—like Shelter Island and Nantucket—have adopted measures to control their deer population in order to combat plagues of tick-borne diseases.
Ironically, deer are not carriers of Lyme disease. Mice and small mammals are, harboring the bacteria in their blood upon which ticks feed. Deer ticks are opportunists and will hitch a ride on anything—including deer and people—that moves through their habitat of leaf litter, woods, and fields. Typically, about 25 to 30 percent of ticks in the nymphal stage carry Lyme, while 40 to 50 percent of adult ticks carry it, though the latter are much less likely to transmit the disease to humans because they’re comparatively easy to see—and remove.
 

Strange Symptoms
Most people who contract Lyme suffer through the garden-variety infection and cure—a rash and some sickness followed by a round of antibiotics. In fact, many have undergone this process multiple times and view the whole thing casually—just part of life in New England. Then, there are the horror stories. Someone’s relative went untreated for Lyme and is now suffering from dementia; another is physically disabled.

Andrew Gates, a Sotheby’s broker and co-founder of Little Gates & Co. Wine Merchants in Millerton, New York, spent five days in intensive care at Sharon Hospital after his Lyme infection went untreated for several weeks, initially choosing homeopathic remedies as opposed to antibiotics. “I would not take that course again,” says Gates, who suffered heart blockage that he says “would have killed an older person.”

Both of Gates’s parents have had Lyme, though when his mother, Mary, developed a bull’s-eye rash on her stomach in 1987, she initially attributed it to a change in laundry detergent. When she began to get sick, her doctor—who then believed that Lyme disease didn’t exist west of the Connecticut River—told her she was suffering from stress and the feeling would pass. Soon, she was experiencing memory loss and other neurological symptoms.

“I would stand there at a cocktail party and I couldn’t follow the conversation—it was like my brain wasn’t working right,” recalls Mary Gates, a psychotherapist and Episcopalian priest. “It was frightening, and I started to feel like I was going crazy. The worst thing was that I kept going back to my doctor with the same symptoms, and it got to the point where I could tell he didn’t want to see me and probably thought I was a hypochondriac.”

Many Lyme victims tell a similar story about their inability to get a correct diagnosis for a disease known as the “great imitator” because its symptoms often mimic those associated with other illnesses. “Some of my friends and family members thought I was a hypochondriac,” recalls Dr. Benjamin Corsbie, who works in mental health and was infected with Lyme in Northern California. He went untreated for years, during which he visited doctor after doctor who could not help him.
 

Chronic or Crazy?
Many people claim Lyme continues to plague them even after they receive a course of antibiotics, the standard treatment for the last decade. Their condition—known as “chronic Lyme disease”—is not recognized by the IDSA, which says it is unsupported by scientific evidence. Further, a 2007 article in the New England Journal of Medicine concluded that the condition is the “latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections.”

This position provokes outrage from people who believe they in fact suffer from chronic Lyme and, as a result, deserve to have long-term antibiotic treatment paid for by insurance companies. They may find solace in the 2008 documentary, Under Our Skin: The Untold Story of Lyme Disease, which chronicles the stories of several victims whose lives were restored by long-term antibiotic treatment. Peter Wild, executive director at Time For Lyme, a Stamford-based group that advocates for Lyme research and awareness, concurs. “Our experience is that long-term antibiotic treatment helps some people,” he says.

Nevertheless, the National Institutes of Health advises against long-term antibiotic treatment for Lyme disease, given the lack of supporting evidence that it is effective and the potential harm it poses. Dr. Lawrence Zemel, a professor of pediatrics at the University of Connecticut Health Center, agrees, saying, “Long-term antibiotic treatment can be dangerous to individuals, and it increases the risk of creating a super-bacteria resistant to medication.”

For its part, Connecticut flouted the IDSA and other medical authorities in 2009, enacting a law to allow doctors to treat Lyme with long-term antibiotics. Rhode Island, California, Massachusetts, and New Hampshire have similar laws on the books.
 

Risk Factors
While some progress has been made in the fight against Lyme disease, many questions remain. For example: Apart from precautionary measures, such as wearing light-colored long pants tucked into socks and using insect repellent, what are people to do? Does Lyme causes complications for a pregnant woman and her unborn child?

First and foremost, the science needs to catch up to the disease. Case in point: a vaccine developed by GlaxoSmithKline and approved by the FDA in 1998 was scrapped after class-action lawsuits were brought by patients who suffered from the vaccine’s side effects. As a result, there have been few developments toward a pharmaceutical breakthrough for the prevention of Lyme.

Where does that leave sufferers like Dr. Benjamin Corsbie? After being treated with long-term antibiotic therapy, he turned to a regimen that included a strict diet. “I’m a lot better off, but I still have the infection in my blood and continue to have symptoms,” says Corsbie. He adds that IGeneX, Inc., a laboratory in Palo Alto, California, that specializes in testing for Lyme, is an indispensable tool for diagnosing the disease, and he accuses the mainstream medical community that rejects the existence of chronic Lyme of being irresponsible, reckless, and arrogant.
Nonetheless, the majority of doctors I spoke to in Connecticut were supportive of the IDSA and its controversial guidelines. “Doctors should follow the science,” says Dr. Mark Marshall, chief of staff at Sharon Hospital. “You have to look for the best evidence, and at this moment, the long-term treatment of post-Lyme syndrome is not supported by the evidence.”