The doctor of last resort
Most Western Virginia physicians side with CDC guidelines where chronic Lyme disease is concerned. But one area doctor risks it all to make her own path.
By Beth Macy | 981-3435
LEXINGTON — Dr. Cathryn Harbor was volunteering at her children’s camp outside Charlottesville last summer when she noticed a startling phenomenon: In the span of one week, 10 of her 100 campers came to her complaining of flulike symptoms.
Each reported being bitten by a tick, and four were spotted with suspicious rashes. All 10 cases were a ringer — at least in Harbor’s mind — for suspected Lyme disease.
With their parents’ permission, she treated the children immediately, and then she called the health department to ask: Should we shut the camp down?
Harbor, 50, runs a solo family practice in Lexington. An avid cyclist, she rides her bike to work, which is a cottage nestled amid Washington and Lee University’s fraternity houses.
Raised in a family of academics and activists — her minister dad was a Davidson College professor, both parents were Vietnam War protesters and civil rights advocates — she had dreamed of curing world hunger before she realized she hated agricultural economics and went to theUniversity of North Carolina School of Medicine instead.
She hated medical school, too — but only because it seemed more about regurgitating facts than about complex, critical thinking.
“I don’t think the world works in multiple choice,” she says.
Her office opens onto a begonia-filled screened porch. During the warm months, her patients hear crickets chirping.
But the medical world beyond her doors is not so inviting.
In the past year, Harbor has become an outlier, a minority doctor who believes in the aggressive treatment of acute Lyme and its lingering effects, commonly referred to as chronic Lyme. It’s a position nearly as frustrating as trying to cure world hunger.
It’s so politically contentious that when she called the Virginia Department of Health to say she was swamped treating campers with acute Lyme, the response was: You can’t possibly have that many cases because the number of Lyme-carrying ticks in Western Virginia is insignificant and small.
Harbor wasn’t convinced, then or now. And she’s not standing by idly while researchers, scientists and Lyme advocates duke it out over the treatment of Lyme and the question of its latent effects.
Both sides agree on the existence of acute Lyme and its cause — a corkscrew-shaped spirochete, a bacteria that transmits Lyme when an infected deer tick feeds on a human. But this is where the camps part ways:
The medical establishment believes that acute Lyme is easily treated with a short course of antibiotics, with the exception of a very small number of patients who may get post-Lyme inflammatory illness or an immune system imbalance.
The outliers contend that chronic Lyme is a severe and potentially crippling disease, with a wide range of symptoms that set in when acute Lyme is not treated early or aggressively enough. They believe the spirochetes are virulent and hard to detect, corkscrewing deeply into joints and other collagen-rich tissues in the brain, eyes and heart.
They reason that the best regimen for late-stage Lyme includes longer courses of antibiotics, ranging from months to a year or more. But the establishment argues that long-term antibiotics are not only unproven, they’re potentially dangerous.
Meanwhile, sick people keep showing up at Harbor’s door, nearly 100 of them since February alone, some from North Carolina and Maryland. Most have already seen multiple doctors who have treated them for multiple illnesses. And yet their pains and complications persist.
In the face of uncertainty — and at great personal risk to her livelihood — Harbor has chosen to treat them aggressively for chronic Lyme, with a multipronged approach that includes prescribing more antibiotics than the Infectious Diseases Society of America and the Centers for Disease Control and Prevention recommend.
“But when you’re the doctor of last resort,” she says, “you keep trying other things.”
It’s some of those other things that keep getting doctors in trouble. In September, 73-year-old Dr. Geoffrey Gubb shuttered his Eastern Shore practice after the Virginia Board of Medicine put him on probation and permanently banned him from prescribing narcotics. The investigation found that Gubb had treated more than a dozen Lyme patients with high-powered pain drugs including oxycodone without properly monitoring and documenting their conditions.
Upward of 30 doctors, most of them in the Lyme-riddled northeastern states, have been similarly sanctioned in the past decade. Chronic Lyme advocates have responded by lobbying four states to enact laws protecting doctors who prescribe long-term antibiotics.
But the volleys continue in point-counterpoint fashion, as Lyme spreads south and west from its New England ground zero. Among the establishment’s latest strategies, according to Northern Virginia Lyme lobbyist Monte Skall: Pick a so-called “Lyme-literate” doctor, go after his or her records and create a chilling effect on other doctors who dare treat outside the IDSA guidelines, considered the gold standard of care.
“A lot of physicians in our state are hesitant to get involved because of the medical debate that’s raging about this disease,” says Skall, president of the National Capital Lyme and Tick-Borne Disease Association. Her McLean-based group is pushing the Virginia General Assembly to reintroduce a Lyme bill in January that was shelved last year. She’s also a member of Gov. Bob McDonnell’s Lyme Disease Task Force, created in October to examine the diagnosis, treatment and public awareness of Lyme.
The CDC maintains that its Lyme protocol is not a mandate for clinicians. Echoing the IDSA guidelines, it recommends limiting antibiotic treatment with an eight-week ceiling but holds that the vast majority of Lyme cases are easily treated in two to four weeks.
Its case definition for Lyme is supposed to be used to confirm the spread of Lyme and then alert the public as necessary. But most doctors view the guidelines as “black and white and incontrovertible,” Skall says.
Doctors who rely only on the CDC’s narrow case definition may “fail to diagnose some patients who in fact do have Lyme disease,” especially those with late-stage neurologic Lyme, says the New River Health District director, Dr. Jody Hershey.
Others, by treating patients for “probable Lyme,” err on the side of treatment, arguing that the “serious consequences for physical, cognitive and functional disability associated with chronic Lyme disease outweigh the risks of antibiotic therapy,” Hershey says — the essence of the controversy.
Gubb was an agnostic about chronic Lyme until 2005, when he treated a seventh-dan karate black belt who’d apparently been crippled by the disease. Later that year, Gubb himself tested positive for Lyme disease as well as a malaria-like co-infection called Babesiosis.
“You’ve got 400 doctors saying Lyme’s a big deal, and 400,000 saying you should forget it, especially from the big places like Johns Hopkins and Yale. So you tell yourself, well, how can 400 be right and all this other bunch be wrong?” says Gubb, a solo family practitioner and former emergency-room doctor.
It reminds him of the early-1900s saga over syphilis. In its advanced stage, it was originally thought to be a psychiatric disorder called “general paresis of the insane.” That shifted with the discovery of the syphilis spirochete and the invention of penicillin to stamp it out.
“If you want to go into [treating Lyme], you have to go into it knowing there’s a good chance that sooner or later somebody will file some kind of a complaint,” Gubb says.
On the other hand, had he not dipped his toe into the roiling waters of Lyme: “I’d probably be in a wheelchair by now.”
‘She’s being brave’
Harbor’s minority opinion was also borne of personal experience: A tick bit her at the same summer camp in 2007 as she picked wineberries along the Appalachian Trail.
She was so blase about her bull’s-eye rash — a telltale symptom of Lyme — that she used it as a teachable moment, showing it to her patients. But she’s come to believe that she was undertreated with a 10-day course of doxycycline, a common antibiotic also used in the treatment of acne and a variety of infections.
About the same time, several of her patients — including Roanoke-area civic leader and longtime Hollins University trustee Anna Lawson — told her about their battles with Lyme and brought her books on the subject.
Lawson, who says she believes she was undertreated in the wake of a 2006 tick bite, learned about chronic Lyme from Hollins art professor Nancy Dahlstrom, who was disabled for four years before being diagnosed by a Maryland doctor. Lawson went to him, too — at a cost of several thousand dollars, none of it covered by insurance.
But she also continued seeing Harbor, who was studying the disease and trying to figure out why her infectious disease colleagues were turning so many Lyme patients away.
Last winter, Harbor had her own aha moment when she came to believe that the cyclic headaches and neck pain she’d been blaming on bicycling, hormonal issues, the stress of being a working mom with three teenagers — anything but the disabling spirochete — were actually latent effects from her 2007 Lyme.
The headache felt like a drill bit going through her skull. She used topical muscle relaxants to get through the day and sought relief from massage and physical therapists. “I had no appreciation of how horrible it was to be in pain,” she says.
By the time physical therapist Rick Sidor sought her out earlier this year, Harbor had established her own Lyme protocol. It’s an almost-echo of the guidelines adopted by the International Lyme and Associated Diseases Society — the minority doctor group that opposes the Infectious Diseases Society of America.
But long-term antibiotics are only part of her approach. She demands that her chronic Lyme patients exercise regularly and eat a diet rich in vegetables, whole grains and immune system-boosting herbs.
“She’s being brave just treating me,” says Sidor, who’s now in his seventh month of an oral antibiotic course — and says he feels better than he has in 15 years.
He believes he contracted Lyme in the mid-1990s after clearing vines from a pine tree in the back yard of his Southwest Roanoke County home, part of a newer development that’s rife with deer.
But Lyme was nowhere on Virginia doctors’ radar at that time, so his doctor treated him with an antiviral medication, which made him worse.
When he returned to the doctor a few weeks later, he was advised to see a psychiatrist, which infuriated him.
“I am not somebody that wants to lay on the couch,” says Sidor, 49, who played college football and runs his own physical therapy practice.
He was eventually diagnosed with chronic fatigue syndrome and, over the next several years, treated for bouts of pain, sleeplessness and a bone-crushing fatigue that some days made it hard to raise himself from a chair. He forgot things — the name of a popular employee, for instance — a symptom commonly referred to as “Lyme fog.” He’d go to make a pot of coffee, only to realize he’d just made one moments before.
“Last year I knew that 99 percent of America would not be at work the way I felt,” he says. “When you’re in the middle of it, it’s like the worst flu ever — on steroids — but only with this, it’s month after month, year after year.”
He wishes the naysayer doctors could feel the pain he feels. “How many others are suffering because these docs think they know everything?” he asks.
Here’s where Harbor differs from Gubb and most of her maverick colleagues: She will treat patients like Sidor with strong doses of oral antibiotics for much longer than the IDSA-recommended eight-week ceiling. But she seldom prescribes opiates, and she’s not comfortable overseeing intravenous treatment in an outpatient setting. The IV treatment may pack a stronger and more immediate punch, but it’s also more likely to summon the board of medicine to her door.
Besides, she’s not convinced that antibiotics can eradicate each and every spirochete, even though she sees the drugs as useful tools in her physician’s bag.
“I think antibiotics keep the spirochete numbers low enough that it gives the immune system a fighting chance, but I think it’s equally important to build up the immune system,” she says.
Infectious-disease doctors insist that post-Lyme complications are not caused by active spirochetes, but Harbor said she believes the science is uncertain and incomplete: “If you’re not embracing uncertainty and doing your best in the face of it, you aren’t being scientific.”
While some allege that Lyme doctors are charlatans profiting from desperate people who suffer from “affluenza,” Harbor insists she’s not getting rich. She spends 45 minutes with each new patient, has only one employee (a receptionist) and takes Fridays off to tend to family concerns.
“You’ll find me here at night sweeping the floors,” she says.
“What’s difficult is to feel that I’m endangered when all I’m doing is the best I know how to do.”
‘Not my boss’
On the Lyme treatment spectrum, Harbor is more conservative than Gubb but more liberal than LewisGale Medical Center infectious-disease specialist Dr. Muddasar Chaudry — and far to the left of his colleagues at Carilion Clinic.
Chaudry will treat outside the Infectious Diseases Society of America guidelines on occasion, including for a nurse whose cognitive function was so impaired that “she had trouble staying awake during her interview with me.” He gave her almost three months of IV antibiotics — well beyond the guideline limits, but her condition was so dire he felt he had to try something. (He doesn’t know whether the patient recovered, he says, because she never returned to him.)
In another case, a Lyme-positive veterinarian he’d already treated for 12 weeks returned for further treatment. But Chaudry refused, saying his hands were tied: “Our practice is restricted by higher authorities, like the CDC.”
A year later, he took a call from a home-health agency asking him to approve an order for IV antibiotics for the same vet, and again he refused. The woman had been so desperate for treatment that she had already started her own IV, he says.
He feels sorry for such patients, and he hates it when colleagues say it’s all in their heads.
Of the 25 to 30 Lyme referrals he gets a year, many come from Carilion practitioners, Chaudry says.
That may be because the Carilion infectious-disease department has taken such a hard-line stance against chronic Lyme — its section chief, Dr. Thomas Kerkering, doesn’t believe it exists. (“So far there is no verifiable evidence that there is a condition called chronic Lyme disease,” he asserts.)
When patients beg for antibiotics, Chaudry tells them: “Antibiotics are poisons to bacteria, and they’re also poisons to our bodies, and I don’t experiment with poisons.”
It’s an argument Harbor finds disingenuous. “What do you say? ‘I’m sorry you’re in pain, and you weren’t in pain when you were on antibiotics — but the IDSA says I can’t give you anymore’? The IDSA isn’t my boss.”
She is ethically compelled to treat patients the best way she knows how. She finds tactical flaws with the IDSA-cited studies that dismiss long-term antibiotics as ineffective and dangerous. “The research questions are posed by people who set the study up so they get the answers they want. Nobody’s doing the studies I’d be interested in seeing. Nobody.”
Can antibiotics truly cure the ailment that advocates call chronic Lyme? At this point, Harbor says the answer is unknowable, shrouded in controversy and conflict of interest. Patients are the ultimate losers in the Lyme wars, she says, because the politics of treatment have trumped patient health.
“If there were a drug that treated chronic Lyme effectively, the guidelines would be paid for by the drug industry, and there would be a different narrative about Lyme,” she says.
About that much, she and Chaudry agree. Pharmaceutical companies don’t profit on short-term antibiotics — not the way they do on lifelong cholesterol and diabetes drugs — which hinders the development of newer agents, Chaudry says.
“It’s very expensive to develop a new drug, and if they’re not going to make money, they’re not going to work on it,” he says. “So the government has to fund the research.”
It all comes back to the ticks.
Harbor admits she’s scared to death of the bugs, partly because there’s been scant study of them in recent years. On vacation in Alaska last summer, she and her W&L geologist husband, David, joked that they’d rather deal with grizzly bears than ticks: At least with bears, it’s not so insidious; either you’re dead or you’re not dead.
The latest research done on Ixodes scapularis in the South was published in 2004 — in Florida, nowhere near the Mason-Dixon line. Yale University researcher Robert Jory Brinkerhoff collected ticks in Western Virginia in 2004 and 2005 as part of an Ixodes occurrence map of the eastern United States. Back then, he found no Ixodes from collection sites in Grayson, Smyth and Highland counties — the closest spots to Roanoke that were sampled. But overall, the study did suggest expansion of Ixodes south of its original New England and Upper Midwest hotspots.
“Where there used to not be [Ixodes] ticks, it looks like there are now,” Brinkerhoff says.
While the state’s public health entomologist David Gaines concedes that acute Lyme in Virginia will easily surpass 1,000 new cases this year — almost quadruple what was reported five years ago — he doesn’t want the public to fall prey to tick “hysteria.”
The vast majority of Southeastern ticks are auburn-legged lone star ticks, not the black-legged Ixodes — and only 10 percent of the Ixodes are known carriers of Lyme, Gaines says. But those numbers are based on old research, none of which was done in Western Virginia.
With no state funding for current research, Gaines has had to settle for some unscientific sampling of his own on his family’s Albemarle County farm. He didn’t spot his first black-legged tick there until 2006, but this summer he noted that of the 90 ticks collected, 25 were the black-legged Ixodes.
Those findings fit the suspicions of Old Dominion University scientist Daniel Sonenshine, who published the definitive text on the subject, “The Biology of Ticks,” in 1993. The last time he sampled ticks west of Tidewater was 17 years ago, when Sonenshine and his researchers found a single Ixodes at Fort Lee, near Petersburg.
“But everything has changed so much,” he says. “Everything we used to think was the case before global warming is so different that you hate to make prognostications based on old data.”
Though the first handful of confirmed Lyme in Western Virginia was reported in 2006, the numbers reached a critical mass in the summer when the Virginia Department of Health held a news conference to alert the public. In the Roanoke and New River valleys alone, 65 cases were confirmed this year.
That trend makes monitoring all the more imperative, Sonenshine says.
“This is a disease that’s been affecting almost 30,000 people a year, with a possible threat of long-term consequences if left untreated,” he says. “And the public is frightened of it. So this is not just some little rash you’re talking about.”
Harbor wants to know what’s going on with Lyme in Virginia, in her county, right now. “Because I believe people are getting it, and some of them are self-employed and hunters, and they can’t work anymore. They’re not going on unemployment or disability. They’re just screwed.”
If she has to put her neck on the line to get them treatment, well — no one ever accused her of being a conformist.
It bothers her that the medical establishment won’t entertain the possibility of chronic Lyme.
position with my patients to start with: I’m hostile about what you think you have,” Harbor says.
It’s become such a sore point that some Lexingtonians have quietly gone behind their doctors’ backs to see her after fearing they were undertreated for Lyme.
“These are the people who worry me most — the ones who think they have Lyme and go to their doctor, who’s trained that if you think you have Lyme, you’re crazy.
“And fair enough, we do need to consider other things,” she says. “But why do they think the ticks out there aren’t carrying spirochetes? What’s their data source, and when’s the last time they checked?
“And where’s the health department in all this? It’s hiring Mr. Gaines to tell me there’s no Lyme on the AT when I’ve seen it in my campers.”
She may feel embattled, but Harbor says she sleeps well at night knowing that most of her patients are not just being heard, they’re also getting better — with or without the evidence-based research to prove why that is.
“I don’t like operating out of fear,” she says. “But the truth is, I’m more afraid of spirochetes.”
This story is the third in a three-part series on Lyme disease. It first ran in The Roanoke Times on Tuesday, Dec. 21, 2010.