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Marin Independent Journal (San Rafael, CA) - Tuesday, February 21, 2006 Author: Richard Halstead
In 1995, when she was living in San Rafael, Katherine Renfield was awakened by a tick bite on the back of her leg.
A bulls-eye rash developed soon after. Her internist diagnosed her as having Lyme disease . She took a low dose of the antibiotic Doxycycline for two weeks, and she assumed that would be the end of it.
"I didn't know much about Lyme disease ," Renfield said. "I wasn't worried about anything." Ten years later, Renfield is still struggling to rid herself of symptoms she said she believes are caused by chronic Lyme disease : fatigue and joint pain. She has been giving herself intravenous injections of the antibiotic Rocephin twice a day since October. Her insurance company, Blue Cross, has paid only $1,120 of the $6,000 cost.
Renfield and other Marin residents - a Lyme disease support group meets once a month at Marin General Hospital - are at the center of a national controversy that swirls around this puzzling disease .
Renfield, who lives in Kentfield, and other Marin Lyme sufferers insist that the standard treatment prescribed by the Centers for Disease Control and Prevention is inadequate. The CDC recommends oral antibiotics administered for 10 days to a month, depending on severity. These Lyme sufferers also assert that many cases go undiagnosed because the CDC's standard tests fail to detect the disease .
Six months after her initial treatment, Renfield said she began experiencing severe eye infections, rashes, fevers and flu-like symptoms. Two blood tests recommended by the CDC for identifying Lyme disease turned up positive.
Mary Ellen Guroy, an infectious disease doctor based in Novato, treated Renfield with a six-week course of intravenous antibiotics.
The eye infections and fevers disappeared. But six months later, Renfield said, she again was suffering from joint pain, bouts of fatigue and cloudy thinking. Dr. Guroy could not be reached for comment.
Renfield is being treated by a Nevada City family practitioner, Steven Harris. Harris, who has made Lyme disease a specialty, is the son of Nick Harris, president of Igenex Inc. of Palo Alto, one of the only private providers of Lyme disease tests.
Steven Harris also is treating Tom Eddington of Mill Valley. Eddington said he sought out Harris after becoming dissatisfied with his infectious disease doctor. Eddington heard about Harris at the Marin General support group.
Eddington said that most doctors know little about Lyme disease , so they follow the CDC's recommendation for a relatively brief course of treatment with antibiotics.
After a four-week intravenous treatment with antibiotics failed to cure him, Eddington chose a more rigorous approach.
Beginning in July 2004, Eddington took antibiotics orally and intravenously for 18 months. He is still taking oral antibiotics and expects to continue doing so for at least another four to six months.
He estimates his treatments have cost him $50,000.
Testing for Lyme is just as controversial as the recommendations for treatment.
In 2001, federal regulators threatened to shut Igenex down following complaints by the New York Department of Health and California's Laboratory Field Services Unit about the reliability of the company's tests.
Later the same year, however, the Centers for Medicare and Medicaid Services backed off after being contacted by several members of Congress.
The politicians had heard from constituents who said that Igenex was being treated unfairly.
"We learned a lot about how to inform government and politicians about what we're doing in a way that bureaucrats can understand," Nick Harris said.
Harris says the CDC's procedure for interpreting the standard tests for Lyme is flawed.
"It's not sensitive enough," Harris said. "There is probably a backlog of thousands, if not tens of thousands, of patients in California with disease caused by Lyme that have gone undiagnosed. They've been put into categories of chronic fatigue or fibromyalgia."
Ken Broad of Mill Valley, a portfolio manager for an investment company in San Francisco, said he believes his symptoms - including numbness in his leg and muscular twitching - is caused by Lyme disease . Broad has been tested twice, however, and both times the results were negative.
"The fact that there is not a wholly reliable diagnostic test is a huge part of the problem," Broad said.
Broad has been taking various combinations of oral antibiotics since September 2004. He is about to begin intermuscular injections of antibiotics.
David Witt, chief of infectious diseases for Kaiser Permanente Northern California, said he would be "very skeptical" of any diagnosis of Lyme disease that lacked positive test results.
Witt said he also is wary of testing procedures that deviate substantially from the guidelines laid out by the Infectious Disease Society of America and the American Rheumatologic Association.
"There are a couple of labs around the country that can find Lyme in almost anyone," Witt said. "Unfortunately, the treatments aren't harmless and, whatever the problem is, a prolonged course of antibiotics isn't going to solve it."
In most Lyme cases, Kaiser would prescribe no more than a month of antibiotic treatment, Witt said.
A study published in the Annals of Internal Medicine in 1998 reported a phenomenon of overdiagnosis and overtreatment of Lyme disease . Of the 209 patients who participated in the study, 60 percent were found to have no evidence of current or previous infection. The researchers found that more than half of the patients had treatable conditions such as depression, rheumatoid arthritis and bursitis.
Last year, the CDC issued a warning about Lyme tests "whose accuracy and clinical usefulness have not been adequately established."
Celia Golden, a deputy public health officer for Marin County, said there were only six cases of Lyme disease reported by Marin doctors in 2005 and another six patients who tested positive. Since 1990, the number of Lyme cases in the county has remained steady, fluctuating between 1 and 10.
But Nick Harris said his lab alone reported six positive test results to Marin residents in the last four months of 2005 and four so far this year.
Marisa Battilana of San Rafael, whose family member contracted Lyme disease several years ago, said she believes the county's numbers vastly underestimate the disease 's presence in Marin. Battilana said she has seen as many as 25 people attend the Lyme disease support group meeting at Marin General Hospital. Battilana hosts a table at a local farmers market where she disseminates information on Lyme .
"I meet people every week who have been recently infected," Battilana said. "I'm meeting an average of two people a week."
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