Ticked off — Chronic Lyme disease sufferers battle for diagnosis, treatment
By Nick Casey, Special to the Town Crier
Originally published by the Los Altos Town Crier, June 21, 2006:
http://www.latc.com/2006/06/21/special_sect/special_sect1.print.html
Carol Ann Schaffner, a Los Altos mother of five, was diagnosed with Lyme disease in 1999. The experts say she should not still be sick: According to the U.S. Centers for Disease Control and Prevention, ordinary cases of Lyme disease can be fully treated with 21 days of oral antibiotics. The Infectious Disease Society of America contends that Lyme disease is “easily treated and cured” in about 95 percent of all cases.
And yet, seven years later, Schaffner continues to feel Lyme disease symptoms: extreme fatigue, joint ache, muscle pain and shortness of breath. A scan showed the disease has spread to her brain, which causes her to lose words in midconversation and suffer from short-term memory loss. She spends about $3,000 every month on oral and intravenous medications for herself and her two children, who also have the illness.
And they are not the only ones. Ellen of Los Altos and Theresa of Menlo Park — who did not want their last names used — said their symptoms are not going away either. They call themselves “Lymies,” part of a growing group of sufferers who are not recovering as quickly as some experts claim they should be.
“A lot of the science being used by these organizations is over 20 years old,” said Dr. Raphael Stricker, a San Francisco doctor and president of the International Lyme and Associated Disease Society. He is one of only three doctors in the Bay Area who specializes in treating Lyme disease.
“The reality is there's just a handful of individuals in the IDSA who have an interest in the disease at all,” he said.
It is generally agreed that Lyme disease is an infection caused by the bacterium Borrelia burgdorferi, carried by deer, mice, squirrels and other small mammals. On the West Coast, it is transmitted from these animals to humans through bites of the Western blacklegged tick. Known scientifically as Ixodes pacificus, the tick is very difficult to see. Nearly imperceptible to the human eye in its nymph stage, it is about the size of the period at the end of this sentence when fully mature.
A victim's first symptom is an erythema migrans rash, a bull's-eye-shaped red irritation around the bite, accompanied by flulike nausea. If noticed immediately, doctors agree, the disease can be stemmed with a three-week cycle of antibiotics.
But Schaffner and her son never saw their initial tick bites. Neither did Theresa. Ellen has no recollection of even being bitten.
The intractability of such chronic cases has caused confusion and debate in the medical community and considerable anger among disease sufferers.
“My physician first told me I had housewife's disease,” said Schaffner.
Lyme disease is known as the “great imitator.” Its symptoms mimic those of many other disorders, including multiple sclerosis, fibromyalgia and Chronic Fatigue Syndrome. In cases lacking the smoking gun of a tick bite, diagnosis proves to be its own quagmire. Schaffner was initially referred to a therapist. It was only after eight years of escalating symptoms that she was finally diagnosed with Lyme disease.
Similarly, Ellen saw numerous doctors and spent approximately $250,000 over eight years before being properly diagnosed. Two years ago, Ellen read a medical newsletter article that gave her a clue that her Chronic Fatigue Syndrome diagnosis was actually Lyme disease.
“I asked the doctor treating me to be tested for Lyme,” she said. “The tests were inconclusive — one lab test was positive and the other was negative. When the doctor said, ‘Well, if you have Lyme, it's very mild,’ I replied, ‘I want a second opinion.’ In the end, I was right!”
The reason so many Lyme patients slip through the cracks, Stricker said, is not because physicians are not testing for Lyme disease but because they are using an ineffective test. The CDC recommends using an enzyme-linked immunoassay (ELISA) test, a blood test that detects a large set of antibodies associated with the B. burgdorferi bacterium.
If the test is negative, no further testing is recommended, according to the CDC.
Dr. Christine Green, a Los Altos family practitioner who specializes in treating Lyme disease, believes in further testing.
“The ELISA misses about 50 percent of Lyme cases,” she said. “You might as well just flip a coin.”
Green said a more reliable screening is the Western blot, which checks for 10 to 12 antibodies associated with B. burgdorferi — several more than the ELISA. Lyme antibodies vary depending on where the bacteria have settled in the body. Many of the variations that can be detected by the Western blot do not show in the ELISA. As a consequence, all Lyme patients with false-negative ELISA results will never receive the test many experts feel is the only reliable non-clinical method of testing for Lyme disease.
“If we had an AIDS test that missed 50 percent of all AIDS patients, people would be screaming on the Capitol steps in Washington,” Stricker said. “Because it's Lyme, no one seems to care.”
This often means that the afflicted are told that their symptoms are all in their heads. “People begin to think of you as a malingerer,” Ellen said.
Schaffner experienced similar difficulties. Her doctors would not order proper tests, she said, and her insurer would not pay for them.
When she was walking out of her clinic one day, Schaffner said, a nurse stopped her. “‘You know you do have Lyme disease,’ she told me. ‘Doctors at the hospital refuse to treat chronic Lyme disease.’”
Because many hospitals lack an acknowledged expert in Lyme disease, their doctors follow the guidelines of national medical organizations, which maintain that Lyme disease is not a chronic illness.
Eventually, Schaffner traveled to Atlanta at her own expense, where a physician, a high school friend, performed the tests to confirm the disease.
For both Schaffner and Ellen, diagnosis was only the beginning.
Both have undergone a regimen of powerful antibiotics and drugs, both have tallied immense medical bills. Both contracted the same coinfection, Babesiosis — a common occurrence because ticks transmit numerous other bacteria along with Lyme. The women continue to have neurological disorders and neuropathy — Schaffner experiences memory problems, Ellen suffers painful, burning legs and feet.
Schaffner and Ellen are fighting back. Ellen, whose fatigue had prevented her from holding even part-time work, aims to resume work slowly, dividing her energy between freelance writing and personal fitness coaching. Schaffner, who contracted the disease a second time when bitten by another tick, has become an advocate for both her children and the Lyme disease community. Her daughter, who contracted Lyme disease before enrolling in UC Santa Cruz, has published articles in national journals in an effort to correct misunderstanding of the illness.
Author Amy Tan freely shared her own experience with Lyme disease with a Celebrity Forum audience in April 2004. Her story of infection and diagnosis mirrors those above. Infected without realizing it, she associated the early symptoms with her frequent airline travel. When her symptoms expanded into seizures, memory loss, hallucinations and foot pain, like other sufferers, she went to her doctor for a diagnosis.
Tan was “referred to specialist after specialist” and endured countless laboratory tests with no specific diagnosis. These were well-known physicians, recommended by her doctors in major urban centers — and they didn't know, she said.
Tan finally matched her major symptoms with the description of Lyme disease on the Internet and found the name of a Lyme disease specialist. Within two weeks, she tested positive for Lyme on the Western blot, which confirmed that doctor's diagnosis. Because Tan, like Schaffner, Ellen and Theresa, received a late start on treatment, it took a while for her symptoms to lessen.
She has become an advocate for awareness and early diagnosis. Tan pointed out that she is able to pay for the expensive treatment but that many insurance carriers refuse to cover the ongoing care.
Lyme disease specialists have had to take up arms as well — not just for their patients' sake, but also for their own.
“The medical community has gone after physicians who treat chronic Lyme disease,” said Stricker. Because of the controversy regarding long-term treatment, the few doctors who offer it have been threatened with prosecution and license revocation by national organizations that disagree with their treatments.
In February 2005, the California Assembly sought to protect such doctors by passing an act to amend Section 2234.1 of the Business and Professions Code, making it unlawful for professional organizations to discipline physicians who aggressively treat long-term cases of Lyme disease. The bill later became law.
“We need more legislation like this in other parts of the country,” said Stricker.
For more information, visit the International Lyme and Associated Disease Society at www.ilads.org or the Centers for Disease Control and Prevention at www.cdc.gov.
The Mountain View Lyme Support Group meets 6-8 p.m. the second Tuesday of each month in Room D, El Camino Hospital, 2500 Grant Road. The next meeting is scheduled July 11.