Doctors hotly debate treatment of Lyme disease

0 Comments | Oakland Tribune, Nov 20, 2006 | by Suzanne Bohan

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 8 and 12, were getting bored, so Carbon wandered into a nearby field with them.

Little did she know that she would soon enter one of the most contentious medical debates -- the diagnosis and treatment of Lyme disease.

Back home in San Mateo, Carbon was alarmed by 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 caused 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, that cause Lyme disease. The test, however, misses the antibodies about half the time. Her ELISA test was negative, as was another 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 on Saturday, speaking in a voice that her husband calls "slurred and robotic."

Then Carbon read an article about a San Mateo woman who'd been misdiagnosed for years with multiple sclerosis before 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 are 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 physi-

cian 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 other 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 from October to 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.

In about half of cases, a bite from a tick infected with borrelia develops a large, circular rash. In many cases, flulike symptoms develop, along with fever and body aches.

After Cajbontested positive for Lyme disease, Stricker prescribed intravenous antibiotics to kill the borrelia.

Cajbon said her health has since 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 them on her own, because her doctor believes she has chronic Lyme disease, which 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 call for a four- to six-week course of antibiotics and advises against long-term IV antibiotics.