Susan Chinnock had no idea what was wrong with her daughter, Alice Levitt. Neither did the two dozen doctors who examined the Greenwich, Conn., youth over six years in the 1990s. Whatever it was, Chinnock knew it was serious, and awful. After she was diagnosed, it took another seven years and more than a million dollars of their own money before Levitt was “cured” of her ailment, chronic Lyme disease — a diagnosis many doctors say doesn’t exist and was all in her head.
In a sense, they were right: Many of Levitt’s symptoms were neurological. They began at age 10, when she developed joint pains, headaches, dizziness, chronic fatigue and “brain fog,” which doctors initially diagnosed as fibromyalgia. By age 15, Levitt was so sick she was attending school less than two hours a day. Several physicians, including a well-respected Connecticut neurologist, recommended she see a psychiatrist.
“I knew that that wasn’t what was wrong with Alice. She was loving school, not hating it,” Chinnock recalls. “She was having a wonderful life, until this got in the way.”
At 16, Levitt remembers cooking herself dinner one night and working on a book report, then going to bed early. When she awoke the following morning, she couldn’t walk; her mother had to carry her into the doctor’s office.
That was in April 1996. Over the next six months, four blood tests for Lyme all came back negative. Then Levitt went to see Dr. Bernard Raxlen, who looked at her and immediately said, “I’ll bet my medical license that that’s Lyme disease.” He knew that the tests for Lyme are notoriously unreliable. He’d originally become interested in tick-borne diseases while working as a psychiatrist; an unusually large number of patients came to him with chronic, and often severe, neurological ailments that couldn’t be diagnosed medically. And yet, few of the patients displayed psychiatric disorders.
Raxlen ordered a Single Photon Emission Computed Tomography (SPECT) scan, a form of 3-D brain imaging, which revealed a severely reduced blood flow to Levitt’s brain.
“My doctor said it was the SPECT scan of a 92-year-old woman with Alzheimer’s,” recalls Levitt, who is now a food writer for Seven Days. Subsequent tests confirmed conclusively that she had indeed contracted Lyme.
What followed were years of painful and often debilitating treatment, Levitt describes as “worse than chemo.” She and her mother moved to Vermont to get “above the Lyme line.” In 2003, Levitt’s doctor gave her a clean bill of health, though she still suffers from vague neurological problems when she’s stressed or run down.
Levitt’s case is far from unusual. The disease was first identified in the 1970s among children around the southeastern Connecticut town of Lyme. Today, it’s the fastest-growing vector-borne disease in the U.S., and is more prevalent than West Nile virus, AIDS, and swine and avian flu combined. In Vermont, the number of confirmed cases rose from 26 in 1999 to 330 in 2008, according to the Vermont Department of Health. Though it occurs more frequently in the southern half of the state, health experts warn that Lyme can be found in every Vermont county.
Lyme disease is caused by the bacterium Borrelia burgdorferi, which is transmitted to humans when they’re bitten by an infected deer tick. Acute symptoms, which can appear within three weeks of the bite, include fever, headaches, fatigue, and joint and muscle pains, as well as the classic “bull’s-eye” skin rash. If left untreated, Lyme can spread throughout the body, causing long-term or permanent damage to the heart, brain, joints and nervous system.
The spirochete, or corkscrew-shaped bacterium, that causes Lyme is genetically similar to the one responsible for another infectious disease: syphilis. Like its sexually transmitted cousin, Lyme disease has been called “the great imitator,” because it’s often confused with other diseases, including Parkinson’s, lupus, multiple sclerosis, Lou Gehrig’s and Alzheimer’s. Lyme-awareness advocates call it one of the most misunderstood and undiagnosed diseases of our time.
It’s also one of the most controversial. The Centers for Disease Control and Prevention (CDC) asserts that patients who are treated with antibiotics in the early stages of infection “usually recover rapidly and completely,” though some “may have persistent or recurrent symptoms.” The CDC recommends a treatment of oral antibiotics lasting two to four weeks, as advised by the Infectious Diseases Society of America (IDSA). However, neither the IDSA nor the CDC recognizes “chronic Lyme” as a legitimate medical diagnosis. As a result, many insurance companies won’t cover the cost of its treatment.
And therein lies the rub. A powerful 2009 documentary, Under Our Skin, follows the lives of several long-term Lyme sufferers. Like Levitt, nearly all were told repeatedly by doctors that their debilitating conditions were psychosomatic. They were led to believe there was no long-term treatment for what ailed them.
In fact, many of the doctors who’ve challenged the medical establishment’s stance on “chronic Lyme” — including Levitt’s physician, Raxlen, who’s featured in the film — have endured serious repercussions. Some were subjected to medical audits and lawsuits by insurance companies; others were called before their state medical boards and had their licenses suspended or revoked. This despite the fact that thousands of Lyme patients claim to have benefited greatly from long-term antibiotics.
Under Our Skin also presents compelling evidence that the IDSA’s Lyme protocols were tainted due to the financial interests of the panel of doctors who wrote them. The film explores the chilling parallels among medicine, politics and money, beginning with the timing of Willy Burgdorfer’s discovery of the Lyme pathogen in 1982. That discovery occurred just two years after the landmark U.S. Supreme Court case allowing companies to patent living organisms.
As the film reveals, nine of the 14 panel members had direct conflicts of interest, and potentially stood to gain financially from research and patented vaccines for Lyme. In November 2006, Connecticut Attorney General Richard Blumenthal launched an antitrust investigation of the IDSA’s protocols and found “serious flaws” in its Lyme disease guidelines. Blumenthal and the IDSA agreed to end that investigation in 2008 and conduct an independent review of those protocols.
But the findings of that review, made public just two months ago, offered little comfort to Lyme-awareness advocates across the country. It determined that the IDSA’s 2006 Lyme guidelines were “medically and scientifically justified,” and kept them largely unchanged.
“I’m appalled by that. It sickens me,” says Chinnock, who in recent years has lobbied the Vermont legislature to increase awareness of Lyme.
By and large, the controversies that have swirled around the disease haven’t touched Vermont — yet. That said, none of the self-described “Lyme-literate” medical professionals contacted for this story was willing to be identified in print. All expressed fear of enduring similar “witch hunts” from insurance companies and the Vermont Board of Medical Practice.
Among them is “Cathy,” a Chittenden County physician. Cathy claims she sees about one new case of Lyme every other week, and about half of them present symptoms that have persisted for more than six months. Cathy is one of several doctors in the region willing to buck the CDC guidelines and use long-term antibiotic therapy — for years, if necessary — to combat the disease.
Cathy says she can’t understand why treating chronic Lyme is so controversial. Doctors routinely prescribe long-term doses of the antibiotic doxycycline to 13-year-olds with acne and 80-year-olds with urinary-tract infections, and insurance companies “don’t bat an eye,” she notes. Yet, an identical course of antibiotics for Lyme can raise a red flag with insurance companies and state regulators.
“Elyse” is a registered nurse in St. Albans. As both a health care provider and someone who contracted Lyme disease — twice — she understands all too well the challenges Lyme sufferers face when seeking care.
“There are no other diseases I know of where the medical establishment says, ‘Oh, you can’t treat it that way. There’s only one way to do it,’” Elyse says. “There’s always more than one protocol.”
Elyse’s first encounter with Lyme occurred in 2002 after she was bitten by a tick while picking berries in her yard. Her symptoms were typical: headaches, muscle twitches, vision problems and brain fog. She started on antibiotics within five weeks and got better. By the following January, however, her symptoms returned with a vengeance. By this point, doctors were calling it “post-Lyme syndrome” — often referred to today as MUS, or “medically unexplained symptoms.”
Elyse was fortunate: She found a Lyme-literate doctor in New England who was willing to treat her aggressively with long-term antibiotics. Moreover, her insurance carrier, BlueCross BlueShield of Vermont, has never challenged her diagnosis or treatments. Nevertheless, Elyse doesn’t want to be identified for fear of professional repercussions.
Dr. Erica Berl, an infectious-disease epidemiologist with the Vermont Department of Health, agrees with Lyme-awareness advocates that the disease is often misdiagnosed, a common occurrence when a disease is new to an area. Berl also acknowledges that blood tests for Lyme commonly generate false negatives and positives. Nevertheless, when it comes to treating chronic Lyme, she says, “We generally follow what the CDC says.”
Berl recommends tick checks once a day for anyone who regularly recreates outdoors. It takes about 36 hours for an infection to develop, so if a tick is found, she recommends removing it promptly. Then, she says, watch for the telltale symptoms. Anyone who suspects they have Lyme should speak to a health care professional, who may prescribe antibiotics.
For her part, Levitt has a message for anyone whose life has been dramatically altered by Lyme: With the right treatment, you can get better. Indeed, her dramatic recovery became a cause célèbre among chronic Lyme sufferers nationwide when it was reported in a 2004 article in Newsweek.
That said, Levitt warns that recovery can be a very long haul.
Susan Chinnock leads the Lyme Support Group of Northern Vermont, which meets every two months at the Sheraton Hotel and Conference Center in South Burlington. The next meeting is Saturday, August 14. Info, 899-2713.
The arrival of summer in Vermont practically comes with a mandate to get outside and recreate. Need inspiration? Try Sarah Tuff's tale about her new workout: training for the biathlon. Kirk Kardashian hits the river with a merry crew of scullers, and Lauren Ober catches up with some truly obsessed two-wheelers. Victims of Lyme disease don't feel like doing anything at all; Ken Picard finds out why treating the debilitating illness is so controversial. Nancy Stearns Bercaw's essay about her father's Alzheimer's is inspired by an exhibit at the Shelburne Museum. And in the food section, Alice Levitt reports on her week of going meat-free, while Ken Picard interviews the outrageous cheese lady of Cabot. Read it all, in good health.