Margene Bloom-Roza is battling a disease that doesn’t exist,
according to most doctors. To fight it, she visits a physician
whose name is a closely guarded secret. To find solace, she meets
fellow sufferers online, clicking furtively through message
boards.
Gilroy – Margene Bloom-Roza is battling a disease that doesn’t exist, according to most doctors. To fight it, she visits a physician whose name is a closely guarded secret. To find solace, she meets fellow sufferers online, clicking furtively through message boards.
When she first turned to doctors, beset by fevers, chills and aches, one chastised her for her weight. Others said her symptoms resulted from her pre-existing diabetes. One night, she toppled unexpectedly during a night out with her husband. Two doctors called it “anxiety disease.”
“If I was anxious, it was because I was falling on my face,” Bloom-Roza said. Her self-esteem plummeted as doctors told her she could fix her own problem, that she just needed exercise, that her illness wasn’t real.
Finally, in May 2005, an eye specialist gave her a dire diagnosis: multiple sclerosis. Bloom-Roza was devastated. She knew MS all too well: As a child in Gilroy, she watched women with MS exercising in the family pool, neighbors who disappeared from her life, one by one, as the disease took them. But five months later, Bloom-Roza took a Lyme disease test at a Palo Alto lab on a friend’s advice, and found she didn’t have MS after all.
If she hadn’t, and had taken steroids – sometimes used to treat multiple sclerosis – her immune system would have fizzled, making her Lyme disease worse, she said. Instead, the San Martin woman found herself drawn into the fierce debate over chronic Lyme disease – a sparring match among doctors, patients and even the U.S. Centers for Disease Control.
Critics Say symptoms haven’t been conclusively linked
According to most doctors, chronic Lyme disease is an oddity, if it exists at all. It was first recognized when a smattering of cases turned up in Lyme, Conn. in 1975. The disease is transmitted by ticks infected with the Borrelia bacterium, which sometimes causes a bullseye-like rash; other symptoms include fatigue, chills, sore throat, fever, aching muscles and joints, and swollen lymph nodes. Ninety-five percent of Lyme disease patients are cured by a few weeks of antibiotics, according to Lyme disease guidelines crafted in 2006 by the Infectious Disease Society of America, which warns against longer-term treatments. The CDC and most other public health groups back them.
But patients such as Bloom-Roza, represented by groups such as the California Lyme Disease Association, say chronic Lyme disease symptoms can outlast the standard three-week course of antibiotics, and are often misdiagnosed due to ignorance of Lyme disease, an ailment only recognized 30 years ago. The IDSA guidelines are hotly contested by CALDA and the International Lyme and Associated Diseases Society, whose members charge that the guidelines are too narrow, and fail to outline effective treatments for patients with persistent symptoms. IDSA counters that Lyme disease advocacy groups irresponsibly link Lyme to generalized symptoms such as fatigue, symptoms tough to pin to a specific illness, even when there’s no objective evidence that the patient contracted Lyme disease.
Bloom-Roza, for instance, can’t remember being bitten by a tick, but says it probably happened when she was living in a densely wooded area near Gavilan College.
Long-term antibiotic
treatments split physicians
The opposing doctors often prescribe long-term antibiotics for their patients, a treatment path IDSA considers medically risky and insurance companies are loath to fund. Over-use of antibiotics may also promote drug-resistant “superbugs,” Olson said. But Bloom-Roza and a friend, Carol Ann Schaffner, say the caustic drugs have finally curbed their pain – even though the treatment itself hurts.
Schaffner was bitten by ticks nearly 20 years ago, while living in Virginia. Rashes the size of dinner plates formed on her belly and thigh; dime-sized rashes spotted her feet.
“I assumed it was ringworm,” she said, “and cursed my neighbor’s cat.”
But persistent symptoms began to worry her. She was often drained, and describes collapsing. Her doctor said she was stressed, and dubbed it “housewife’s disease.”
“Being the delicate housewife that I was,” said Schaffner, “I fired him.”
In 1998, after researching the disease online, she took a test. Plucking advice from Web sites, she decided to start taking antibiotics, and pleaded with a high-school friend, now a physician, to help her. The friend covertly supplied her with antibiotics.
After Bloom-Roza told her she’d been diagnosed with MS, Schaffner urged her friend to get tested for Lyme at IGenEx, a “Lyme-literate” Palo Alto lab. IDSA is skeptical of such labs, which return significantly higher numbers of Lyme-positive tests than the standard tests the group prescribes. Labs counter that their tests are more sensitive, and are turning up more real, previously undiagnosed cases of Lyme. IGenEx reported more than 900 Lyme-positive patients in 2006, more than seven times as many as the CDC reported for the entire state of California. IGenEx president Dr. Nick Harris said the disparate results show that public numbers are “bogus”; Shapiro makes the same charge of labs’ high counts.
Talking about antibiotic treatments, Bloom-Roza laughed. A licensed chiropractor, she’s spent decades lecturing her clients against “overdoing antibiotics.”
“I’m flying in the face of my own philosophy,” she said. “But without treatment, you’re only going to get worse.”
Insurance companies pay
only limited costs
Because the IDSA doesn’t recommend long-term antibiotic treatment for Lyme, insurance companies won’t fund it, Lyme activists say. Supporters of chronic Lyme disease have accused the IDSA of colluding with insurers to deny Lyme disease patients more costly treatments. In the past year, Bloom-Roza has paid more than $7,000 for costly medicines such as Malarone and Cholestryamine, which costs $1,189.49 per bottle, she said. Every month, she pays more than $500 to an insurance company that only covers a fraction of her costs.
Lyme activists were pleased last November when Connecticut State Attorney General Richard Blumenthal opened an investigation into how IDSA created its Lyme disease guidelines, concerned that dissenting groups like LDA and ILADS weren’t included. IDSA spokesperson Diana Olson dismissed such theories, saying insurance companies had no involvement in the Lyme disease guidelines, and all groups were invited to provide input, even though they weren’t officially involved.
The existing guidelines cow “Lyme-literate” doctors into hiding, said Bloom-Roza, who declined to give her physician’s name. The San Martin woman located her doctor through a Lyme disease patients’ Web site. Asked how, she said simply, “You’ve got to go to the underground.”
Official counts of
Lyme disease are low
In California, the most frequent culprit is the Western black-legged tick. In its nymph state, it’s roughly the size of a poppy seed. Slightly more than 1 percent of Santa Clara County ticks are infected with the Borrelia bacterium, said Kriss Costa, a community resource specialist with Santa Clara County Vector Control, citing a tick survey that netted more than 1,000 ticks, 15 of them Lyme-positive.
Twenty-one cases of Lyme disease were reported in Santa Clara County last year, said Costa; six of the patients may have acquired the disease outside the county. No patients have tested positive for Lyme at nearby Saint Louise Regional Hospital for several years, said spokesperson Vivian Smith. California tends to have lower Lyme disease infection rates than the eastern United States due to the presence of western fence lizards, which disinfect larval and nymphal ticks that bite them. Because lizards shy from cool, shady areas, the disease predominates there.
The slim numbers reported by the county make many doctors skeptical of Lyme disease. Some are even shocked to hear of California cases, said Schaffner. Confronted with patients such as Bloom-Roza and Schaffner, suffering low energy and aches, Lyme doesn’t jump to mind. Years of pain and throwaway diagnoses such as “housewife’s disease” feed rage among those who say they have chronic Lyme disease, said Schaffner said. That rage spills over into the debate – an unusually fierce one in the dry world of medical standards.
“We don’t typically get controversy over practice guidelines,” said the IDSA’s Olson, sounding perplexed. “In that way, Lyme certainly is unique.”
