Monday, November 20, 2006
Patients caught in deep divide over therapy
By Suzanne Bohan, STAFF WRITER
Article Last Updated:11/20/2006 06:49:15 AM PST
SHELL CARBON, 35, and her husband, both vintage car aficionados, visited a Danville home in the foothills last November to check out an automobile for sale.
But their young son and daughter, both now 8 and 12, were getting bored, so Carbon wandered into a nearby field with them.
Little did she know that she would soon enter into among the most contentious medical debates — the diagnosis and treatment of Lyme disease.
Back home in San Mateo, Carbon was alarmed at a large bump developing on her right leg. She went to her doctor, who asked if she was recently bitten by a tick. Carbon didn't think so. Doctors ran an SRI to see if it might be caused by a blood clot. That proved negative, so they took a watch-and-wait approach to monitoring the strange lump. She's now convinced a tick bite did cause the 7-inch lump.
Over the next few months, the usually active woman, who'd been working for 18 years as an insurance adjuster, became horrified as she developed joint and neck pain, weakness in the right side of her body that forced her to limp, and problems with peripheral and night vision. The right side of her face began sagging, a condition called palsy, and she occasionally had seizures.
After a neighbor suggested she might have Lyme disease, Carbon asked for what's called an ELISA test to see if antibodies had formed to attack the bacteria, Borrelia burgdorferi, which causes Lyme disease. The test, however, misses the antibodies about half the time.
Her ELISA test was negative, as was another given several months later. Meanwhile, she endured a battery of tests and treatments while visiting numerous doctors to find the cause of her deteriorating condition.
"I very quickly reached the point where I couldn't function," she recalled Saturday, speaking in a voice that her husband calls "Slurred and robotic," compared with her articulate speech in the past.
Then Carbon read an article this summer about a San Mateo woman who'd been misdiagnosed for years as having multiple sclerosis, when a more sophisticated test called a Western blot showed she had Lyme disease. The woman, Denise Springer, who was pregnant while believing she had MS, delivered a boy later diagnosed with Lyme disease. While the data is mixed on whether Lyme disease can be transmitted through the placenta, Springer needs no convincing that it does.
Cajbon contacted Springer, who referred her to Dr. Raphael Stricker, a San Francisco physician who's one of a handful of local specialists in treating Lyme disease.
Stricker prescribed the more precise Lyme disease test, which found that Cajbon was infected with borrelia, along with another tick-borne bacteria. "Ticks have been called the 'sewers of infection,'" Stricker noted.
Lyme disease is both misdiagnosed and underappreciated as a health risk in California, another Lyme disease specialist noted.
"People are not going to be thinking 'Lyme disease' in San Jose, but they should," said Dr. Christine Green, a Palo Alto physician who expanded her practice to include Lyme disease treatment after infectious disease doctors declined to fully test or treat her referrals.
One of the enduring misunderstandings about Lyme disease is that it's largely confined to a few Northeastern states like Connecticut and New York. While the prevalence is high in those regions, Northern California is also listed by the Centers for Disease Control and Prevention as a hot spot for what's now the most common form of tick-borne disease nationwide.
The Western black-legged tick carries the Lyme disease bacteria on the West Coast. The California Department of Health Services recently issued a warning, noting that between October and March adult ticks may transmit Lyme disease. During these cooler months, adult ticks climb to the tips of vegetation, often near trails, and wait for a host to brush against them. The field Cajbon wandered into in Danville likely contained such a tick.
About half the time after a bite by a tick infected with borrelia, a large, circular rash develops. In many cases, flu-like symptoms are contracted, along with fever and body aches.
After Cajbon's test was positive for Lyme disease, Stricker prescribed intravenous antibiotics to kill the borrelia.
Since then, Cajbon said her health has improved, although she still walks with a limp.
"My clarity in my head has gotten better," she said. The treatment, she added, "gave me a little ray of hope."
But the intravenous antibiotics are expensive, so Cajbon insisted her regular doctor, covered by insurance, prescribe it. She received six weeks of treatment, which ended Nov. 7, and her health insurance company is now refusing to provide her with any more intravenous antibiotics. She's now paying for it on her own, because her doctor believes she has chronic Lyme disease that needs continued treatment. If an initial infection is not treated within about two months it can become chronic.
In one of the stranger sagas in medicine, the condition that Stricker and other Lyme disease experts call chronic Lyme disease is not even acknowledged by the Infectious Diseases Society of America, an influential group that sets treatment protocols.
On Nov. 1, it issued updated Lyme disease treatment guidelines which called for a four- to six-week course of antibiotics and advised against long-term IV antibiotics.
The guidelines outraged Lyme disease specialists, and prompted the attorney general of Connecticut last week to launch an official investigation into the association's guideline development process.
Dr. Gary Wormser, one of the guideline authors and chief of infectious diseases at the New York Medical College, said long-term exposure to antibiotics pose serious health risks and isn't supported by scientific evidence for the treatment of Lyme disease. He doesn't believe that Lyme disease becomes chronic — one course of antibiotics should clear out any borrelia. If symptoms remain, they may be caused by another disease.
Stricker and others counter that the microbe can evade detection.
"It's probably one of the most complex microorganisms that's ever been described," he said.
"There's this disconnect between the science, which shows this very complex organism, and the clinical approach, which says you can treat it with antibiotics for four weeks and it's cured," Stricker said.
Infectious disease specialists like Wormser, he added, "have staked out a position and they don't want to admit their wrong."
Wormser countered that "infectious disease docs, like all physicians, want to do the best for their patients. The best available evidence indicates that the potential risk of long-term antibiotics outweighs any benefit."
Wormser said many patients come to him after having been treated for chronic Lyme disease, when they've in fact had other conditions such as cancer or hepatitis.
Dr. Paul Mead, an epidemiologist with the CDC, added that studies have shown that people treated for Lyme disease had other conditions. He cited the example of a boy diagnosed as having Lyme disease when he in fact had leukemia.
"That kid with leukemia has been cited about five million times," responded Stricker. "The reality is most of these patients come to me after every other known disease has been ruled out." About three-quarters of his patients recover after going off antibiotics, he said.
While the rancorous debate, often called "the Lyme War" rages, patients desperate for effective treatment get caught in the middle.
When asked what the medical community is doing to bridge the chasm between physicians regarding the diagnosis and treatment of Lyme disease, Stricker had little to point to, other than a proposal languishing in Congress to create a National Lyme Disease Advisory Council.
"I agree this is very undesirable," emphasized Wormser. He said the Infectious Diseases Society of America has expanded its Web site to better explain Lyme disease and that "other ways to address this very issue are under consideration."
Both Wormser and Mead recognized the relief that many people experience after finally receiving a Lyme disease diagnosis, but emphasized their concern that the patients may not be getting the right therapy.
"What I tell people is that I recognize that they're suffering," said Mead. "And many are in horrible ways," he added. "But the best thing is to keep an open mind. Getting the wrong answer isn't going to cure you."
Contact Suzanne Bohan at (650) 348-4324 or firstname.lastname@example.org.