In a 14-year journey with Lyme disease, Andy Rieber has been evaluated for multiple sclerosis and autoimmune disorders. She’s taken long-term courses of antibiotics. Most recently, she went to Germany for a treatment that involved hyper-oxygenating her blood.
During her time at the German clinic, she met four other patients from Oregon. One was a rafting and fishing guide. Another was a 15-year-old who loved to hunt. One was a woman who’d worked for the U.S. Forest Service.
“Oregonians love the outdoors. There are also dangers out there,” said Rieber, a journalist who lives in Adel in southeast Oregon.
Lyme disease is caused by a bacteria that’s transmitted by tick bites. It’s not very common in Oregon, but incidences here and across the country are increasing. That’s a concern because Lyme disease can lead to serious complications affecting the joints, neurological system and heart. While most cases are treated and cured with common antibiotics, about one-third of patients don’t respond and, like Rieber, end up with a chronic, debilitating illness.
Still seeking recovery, she was the beneficiary of a benefit concert, held Sunday at the Tower Theatre in Bend by western singer Michael Martin Murphey. “I don’t know what getting well is going to cost,” Rieber said. “You’re a pioneer. That’s one of the crazy things about having persistent, chronic Lyme.”
Lyme disease is caused by Borrelia burgdoferi bacteria, which is carried by the blacklegged tick, also known as the deer tick, Ixodes scapularis. In California and Oregon, the bacteria is carried by a sub-species, the western blacklegged tick, Ixodes pacifica.
The upper Midwest and Northeast states are thick with the tiny deer tick, and Lyme disease is much more common in the East. But Lyme is no longer limited to those regions. Reforestation of urban areas, overabundance of deer, suburbanization of wooded areas and climate change are helping Lyme spread to new areas, according to Ben Beard, chief of bacterial diseases in the Centers for Disease Control and Prevention’s division of vector-borne diseases.
The CDC has also changed the way it recognizes and counts Lyme cases. In 2013, the agency said there are about 300,000 cases a year — 10 times as many as it reported in the past.
The number of Lyme cases in Oregon has been generally increasing over the past 10 years, possibly because of the blacklegged tick’s expanding range, said state epidemiologist Emilio DeBess. Cases are reported by the patient’s county of residence, so Oregonians could be encountering more ticks here and as they travel across the country.
Oregon reported 44 Lyme disease cases in 2014, according to the Oregon Health Authority. That’s a rate of 1.1 per 100,000 people, far below the U.S. average of 10.6 per 100,000.
Josephine and Hood River counties had the highest rate of Lyme cases. Deschutes and Crook counties have seen on average less than 1 case per 100,000 people each year. The last case in Deschutes County came up in 2015, and one is being investigated this year in Crook County. No case of Lyme disease has been reported from Jefferson County.
The western blacklegged tick is less likely than its eastern cousin to carry the Lyme disease-causing bacteria, so that could be one reason the disease is less common here, DeBess said. However, it’s been about 20 years since Oregon tested ticks for the bacteria and even longer since the state did a comprehensive survey of where ticks live.
The blacklegged tick lives mostly west of the Cascades in Oregon and along the Columbia River basin, but it could also live in isolated spots of high-elevation areas like Deschutes County, DeBess said. “We’re not able to map out the whole state to determine which areas are positive for Lyme disease or which areas are positive for ticks,” he said.
The common tick in Deschutes County is the Dermacentor, or wood tick, which spreads Rocky Mountain spotted fever. The fever causes severe illness and even death if not treated within days. Six cases of the fever have been reported in Deschutes County, most recently in 2013, according to Oregon Health Authority. Crook and Jefferson counties have each seen a case of Rocky Mountain spotted fever.
Tick bites peak in spring and summer, but DeBess said the blood-sucking arachnids are always active. “Tick season is really all year long,” he said.
Rieber contracted Lyme disease during a trip to Massachusetts while she was a graduate student at the University of Pittsburgh. Even though Lyme was well-known in the East at that time, she said doctors in Pennsylvania didn’t spot her classic early symptoms. She developed a form of arthritis that would migrate from joint to joint and make even the smallest activity excruciatingly painful.
Rieber abandoned her doctoral studies in philosophy and moved to Oregon to live with her parents. She found help through patient advocacy groups, including the Oregon Lyme Disease Network. Bend resident Theresa Denham started the nonprofit organization in 2001, as she and her daughter were being treated for Lyme disease, which they contracted in 1992 and went undiagnosed for more than five years.
Awareness about the disease is growing, Denham said. The people who contact her have been dealing with symptoms for an average of two and a half years, but that’s down from an average of seven years when she started the group.
How to care for chronic sufferers is a controversial topic in medicine and one that’s only recently become the focus of major research.
Some Lyme disease patients feel better after long-term courses of antibiotics, but that’s a controversial treatment because there’s no way to tell whether the bacteria is still present in their bodies, said Dr. John Aucott, director of the Johns Hopkins Lyme Disease Research Center in Maryland.
Testing for Lyme disease means looking for antibodies in the blood, so the tests aren’t reliable until after a three-week incubation period. Researchers are trying to develop a more sensitive test, Aucott said.
Researchers are also testing multiple hypotheses about what causes long-lasting illness, which doctors refer to as “post-treatment” Lyme disease, he said. The condition is called post-treatment because most people have been exposed to antibiotics, whether they were targeted at Lyme disease or not.
One theory is that the bacteria, which can evade the immune system and hide in tissue, wasn’t eliminated by the initial treatment. Some researchers think the infection triggers an autoimmune reaction.
Rieber said she was thrilled to see Johns Hopkins launch the Lyme disease research center last year. “There are a lot of people out there who say chronic Lyme disease is a myth,” she said. “People who do have chronic Lyme disease… are treated by doctors as hypochondriacs and malingerers.”