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Geographic Distribution of Ticks in the United States - CDC Maps 2012

Bitten by the controversy bug

The Oregonian

A debate grows on the threat of the insect-spread Lyme disease along with the number of cases nationwide.

Wednesday, July 20, 2005

The Oregonian

It took years for Miguel Perez-Lizano's baffling collection of pains to gather: a racing heart, blurry vision, aching joints and bouts of fatigue and forgetfulness.

But it took the Battle Ground, Wash., man just minutes to enter a medical melee -- the increasingly fierce and political debate over Lyme disease.

In 2000, Perez-Lizano typed his symptoms into an Internet search engine. Among the results was "When to Suspect Lyme," an article by the late New Jersey physician Dr. John Bleiweiss. It reminded Perez-Lizano of a round, red rash, the size of a dinner plate, that erupted on his chest after a 1994 driving trip through Oregon and California.

"That's when it all sunk in," Perez-Lizano said. "It was me that diagnosed myself."

Doctors consider the hallmark "bull's-eye" rash enough to diagnose Lyme disease. But Bleiweiss was just warming up. The article connected more than 150 other symptoms and conditions to the illness. It mentioned well-documented Lyme problems such as arthritis, fatigue, and certain heart and nerve problems. The litany also covered scores of symptoms seldom linked to Lyme: anorexia and vertigo. Parkinson's disease and Tourette's syndrome. Insomnia, sleepiness, low libido, high libido, sweating, stuttering, stillbirth, strokes, sore throat, psoriasis, sinusitis, sound sensitivity and spastic colon.

Perez-Lizano went to his doctor for a final diagnosis but didn't get one: "He said, oh, I was believing in a conspiracy." So Perez-Lizano got a test from a California lab that confirmed his suspicions, and soon started taking antibiotics mailed by a Mexican doctor. Eventually, a California doctor who treats many patients for Lyme disease, including a dozen Oregonians, oversaw a couple years of antibiotic treatment that Perez-Lizano said have resolved his Lyme issues.

Perez-Lizano's tale captures all that bothers both sides of the "Lyme Wars," a debate on the true nature and threat of the country's most common insect-spread disease. That argument, already raging in the East, is spreading West, fueled by Internet facts and fictions, and an increase in Lyme diagnoses -- a trend the debate may be feeding.

"It's a national sociological phenomenon," said Robert Lane, an insect biologist at University of California at Berkeley. "The basis of which -- after all these years working in the field -- is not entirely clear to me. But there are two camps."

One includes patients, advocates and a group of self-ordained "Lyme-literate" doctors who say the disease is far more dangerous and common than mainstream medicine recognizes. That's especially true, they argue, for a tenacious chronic form of the disease that needs months or years of antibiotic treatment.

With less scientific backing for its views, this faction has increasingly turned to politics: Several states have considered or passed laws supporting doctors who treat Lyme with years of antibiotics. Two Lyme-focused bills are pending in the U.S. House of Representatives. And this spring, a California Senate resolution called Lyme disease "a hidden epidemic that presents a major health threat" and endorsed the Lyme-literate doctors and long-term antibiotics.

The other camp holds mainstream infectious disease doctors and researchers, who call Lyme the latest "pop" diagnosis for unexplained syndromes of aches, pains and fatigue. They acknowledge that a small number of Lyme patients have lingering symptoms, for little-understood reasons. But they call the disease overdiagnosed, especially chronic Lyme, and say long-term antibiotic treatment is unscientific and risky.

Lyme disease -- a bacterial illness spread by the bite of an infected tick -- is, in fact, increasing. The U.S. Centers for Disease Control and Prevention logged 21,273 cases in 2003, the most recent year with full data, up from 8,257 cases in 1993. The CDC says the actual number of infections is significantly higher because many cases aren't reported to health officials.

That makes Lyme the main illness spread by insects in the United States. But many diseases spread by food or humans are more common, including the flu, salmonella and AIDS infections. And though Lyme can cause significant health problems, especially if not cured quickly, it is rarely life-threatening.

The rise of Lyme is driven by cases in the Northeast. In the West, evidence shows the illness is uncommon. Scientists have found infected ticks in Oregon and California, especially coastal counties in Southern Oregon and Northern California. But rates of tick infection are far lower than in the East.

So are rates of human infection. Oregon doctors report roughly 15 cases of Lyme disease a year to public health departments. In 2004, preliminary reports show 33 cases, the most since statewide reporting began in 1994. And Lyme is probably underreported in Oregon, as elsewhere. But there is no reason to think the disease is as common as in Eastern states, said Dr. Mel Kohn, Oregon's state epidemiologist.

"It's real. It's here. It's not zero," Kohn said. "But, gosh, compared to a whole lot of other health threats you have, the risk is much lower."

Even California, with its huge population, reports fewer than 100 cases a year. That probably is also an undercount, and a new law requiring labs to report positive tests should yield a bigger and more accurate count, Lane said.

"It won't be in the thousands, like some states in the Northeast," he said. "It'll be in the hundreds."

Lyme is an illness tuned for controversy. Symptoms can be subtle or shifting, mimicking other diseases and delaying diagnosis.

Three general phases mark Lyme disease, with an acute phase starting a few days to a month after an infectious tick bite. The hallmark red rash develops in 60 percent to 80 percent of cases, and flu-like aches and fatigue often accompany. Many cases with these classic signs are spotted early and cured with several weeks of antibiotics.

"The problem," said Dr. John Townes, an Oregon Health & Science University infectious disease expert, "is that the initial symptoms can be silent."

If not treated early, the bacteria can spread and affect different body systems, sometimes mimicking other diseases. Infected people may develop smaller, scattered rashes; nerve problems, such as meningitis or facial paralysis; and joint pain or certain heart-rhythm problems.

If the bacteria survive, a "late disseminated" disease stage could begin, often marked by arthritis and sometimes nerve problems, fatigue and personality changes.

Finding this fickle ailment starts the Lyme Wars. The CDC recommends a series of two tests that look for antibodies to the Lyme bacteria. But the tests can miss some cases or catch old infections already defeated by the body. The U.S. Food and Drug Administration says Lyme tests "should never be the primary basis for making diagnostic or treatment decisions," only confirm diagnoses made by studying patents' symptoms and risk of exposure to infected ticks.

The lack of a good test troubles both camps in the Lyme debate. Patients such as Perez-Lizano say that, even if they have a classic history of a rash and Lyme symptoms, doctors will use tests to rule out Lyme disease.

Frustrated, some turn to a cottage industry of alternative tests. Many of these are not backed by rigorous scientific proof, such as a urine test the federal government recently warned against using. Other labs and doctors use the more traditional blood tests but interpret them more liberally. That practice might avoid missing real cases, but it increases the risk of diagnosing Lyme disease in patients who don't have it.

With imperfect tests, several Northwest residents told a similar tale of being diagnosed with Lyme.

Oregon doctors say Lyme disease is absent in the state and don't consider the ailment when diagnosing patients, said Theresa Denham, who founded the Oregon Lyme Disease Network advocacy group. So people collect a series of opinions from several doctors until they end up with a Lyme diagnosis, often from an out-of-state physician.

"Most of the people, by the time they call the Lyme network, have been diagnosed with about four major illnesses," said Denham.

Denham, who lives in the Bend area, started the network after her daughter was diagnosed. Ashley Denham, now 18, said she was infected with Lyme disease at age 6 and not diagnosed until 14. In the years between, she said, doctors told her Lyme didn't exist in Oregon and offered other diagnoses, such as a "post-viral syndrome," for symptoms including fatigue, fevers and leg and back pain.

"Patients have to be really aware of what the symptoms are, and advocate, advocate, advocate to get a diagnosis," said Theresa Denham -- who was also diagnosed with Lyme four years ago.

Some Oregonians, including the Denhams, travel to doctors in the East or in California who think Lyme disease is not taken seriously enough, especially in the West.

"Oregon is actually the most difficult state in the country to get diagnosed and treated," said Dr. Steve Harris, a Californian who said he has seen "30 or 40 patients from Oregon."

But several Oregon infectious disease experts said there is a good reason the disease is rarely diagnosed here: Few people have it.

What is increasingly common is patients who think they have Lyme disease, not actual cases, said Dr. David Gilbert, an infectious disease expert at Portland-based Providence Health Systems and past president of the Infectious Diseases Society of America.

"I have seen, in maybe 35 years of doing this, at the most two or maybe three cases," he said. "Most of the individuals we're talking about, their clinical and lab pathology is stone-cold normal."

Gilbert said that "throughout the history of medicine" some people have developed a set of nagging symptoms -- often including pain, fatigue and depression -- without an obvious cause. Some of these patients search for an explanation on their own, which creates a series of pop diagnoses that parade like fashion trends through medical offices.

Candida yeast infections were a popular theory for a time, he said. "It was fibromyalgia for a while, and maybe still is," he said. "But I think, unfortunately, Lyme disease will take longer to fade away."

Lyme is an attractive explanation for mysterious ailments, Townes said, because "people want to have something they can treat with an antibiotic."

Those bacteria-killing drugs are the Lyme Wars' second front.

"There are the standard guidelines that Lyme is relatively easily diagnosed and treated," which is not always the case, said Rita Stanley, a Portland resident who ran a Lyme support group based at Legacy Good Samaritan Hospital for a decade. On the other hand, she said, "There is no consensus whatsoever in the types of treatment that the so-called Lyme-literate doctors are offering."

Standard guidelines recommend several weeks of antibiotic pills for Lyme disease. For systemic infections, especially with nervous-system problems, the CDC suggests intravenous antibiotics for "four weeks or more, depending on disease severity." Even with that treatment, a minority of patients have pain, fatigue and cloudy thinking that linger for months or years.

"For those people we don't really have good treatment," Townes said. "And this is where one of the controversies arises."

The faction focused on aggressive treatment says Lyme bacteria are amazingly hardy and able to withstand heavy antibiotic doses. Several Lyme patients said they felt much better on antibiotics but only after years of treatment.

"You really need to treat this for a long time" in such cases, said Dr. Raphael Stricker, a California hematologist who treats about a dozen Oregonians for Lyme. Stricker is president-elect of the International Lyme and Associated Diseases Society, a group formed by the Lyme-literate doctors to advance their diagnosis and treatment views.

But other doctors call months or years of antibiotics dangerous. The drugs have well-known risks, including infected IV lines, allergies and the development of drug-resistant germs. The Infectious Diseases Society of America recommends more than a month of antibiotics only in rare cases, such as arthritis that recurs after initial treatment.

Mainstream doctors don't know exactly what causes lingering pain in some patients after treatment. One theory is that the body may have a sort of auto-immune reaction, continuing to mount a fight after the Lyme bacteria are gone. Doctors also note that a minority of patients has lingering pain after many kinds of illnesses. But they say tests usually don't find lingering or recurring bacteria, the only reason to give antibiotics.

Two different trials have given Lyme patients with lingering pain months of IVs and pills, either antibiotics or a placebo. One trial found markedly less fatigue in patients using antibiotics, but researchers concluded that didn't outweigh the treatment risks. In the other trial, roughly half the patients in each group improved, suggesting that time or a placebo effect is helping patients, not the drugs.

Advocates of long-term antibiotic use argue that these trials enrolled the wrong patients or used the wrong treatments. But they have not come up with equally strong trials proving the benefits of long-term IV antibiotics. But some purveyors have come up with other untested and potentially harmful "cures," including high doses of salt and vitamins, bee stings and removing dental fillings.

"In the last three years, there's been more misinformation out there. There's an acceleration of scams and highly questionable treatments," Stanley said. "You have all these people preying on Lyme patients."

In recent years, Lyme-literate groups have sought laws that make it easier to diagnose and treat chronic Lyme disease. Rhode Island, for instance, made insurers pay for long-term antibiotic treatment and prevented its licensing board from disciplining doctors for prescribing those drugs. Similar bills have been proposed in New York. California's Senate passed a nonbinding resolution that said all health care workers should read guidelines written by the Lyme-literate group.

"It's kind of a strange phenomenon, isn't it?" said Townes. "Can you think of an instance where a specific disease treatment is being mandated by a legislature instead of the scientific community?"

Meanwhile, two Lyme bills pending in the U.S. House of Representatives offer what some say is needed most: money for more research. The similar bills would channel $50 million to $100 million to Lyme research over five years, with an eye toward estimating the ailment's real prevalence, improving prevention and developing a test that might calm the Lyme Wars.

"Until we get a test that's going to be a gold standard" the controversy will continue, Lane said.

2005 The Oregonian In Copyright since 2000