Mountain View resident Debbie Nelson has been hitting the trails at Rancho San Antonio every week, taking on the steep inclines along the PG&E trail with trekking poles in-hand. It takes her about three hours to wrap up the 8-mile hike, but it's small potatoes compared her upcoming two-week pilgrimage through 155 miles of coastal and rural Portugal later this month.
Nelson says she's embarking on the journey from the city of Porto to Santiago de Compostela in Spain -- part of the lengthy pilgrimage route known as the Camino Portugues -- in hopes of raising funds to fight Lyme disease here in the Bay Area. Though the tick-borne disease is a common infection on the East Coast, she said it's been an uphill battle to raise awareness that Lyme disease is alive and well on the West Coast.
Compounding the lack of awareness, doctors have poor methods for diagnosing the disease in its early stages, with detection rates well below 50 percent in the first few weeks, and treatment for the debilitating long-term effects of the disease can be largely ineffective.
Nelson was motivated to kick off her fund-raising campaign this year after her cousin, Jane, died in December following a 20-year battle with Lyme disease. She said Jane didn't see the tick on her, and didn't have the tell-tale "bullseye" rash on her skin that can signal someone has been bitten. When symptoms began to arise, she was misdiagnosed for years before finding out she had the disease, Nelson said. By the end, her cousin had difficulty going anywhere, and was suffering arthritic pain and severe skin pain that made it feel "like her skin was on fire."
"She had four children and she didn't get to watch them grow up," Nelson said. "She was pretty much housebound."
The confluence of factors that led to her cousin's late diagnosis and eventual death are not unusual, according to Linda Giampa, executive director of the Bay Area Lyme Foundation. Doctors use a standard "two-tier" blood test for the disease, and the accuracy is close to about 50 percent for each. This leads to plenty of false negatives, making it easy for Lyme disease to progress beyond its early flu-like symptoms.
"A coin flip is about the best you can do," she said.
Giampa said she and a group of mothers in Portola Valley decided to create the foundation five years ago to raise awareness of Lyme disease's presence on the West Coast, and that both patients and doctors should be aware of the signs and symptoms associated with the disease. Maps of infection rates, released by the Centers for Disease Control and Prevention (CDC), show that most cases are clustered along northeastern states like New York and Maine, but a recent 2014 study shows that a small percentage of western blacklegged ticks -- collected in various open space locales in Santa Clara and San Mateo counties -- carry the bacterial strains known to cause Lyme disease.
The study got a whole lot of press at the time, she said, because there's been a stubborn slowness among doctors to catch up with the fact that Lyme disease is present in the Bay Area and they need to keep a look out for it -- particularly because treating Lyme disease in its early phases with antibiotics is essential to avoiding the grim symptoms associated with later stages of the disease.
"Some doctors say the (patient) is fine because there's no Lyme disease in the Bay Area, and suddenly they're dealing with brain fog, fatigue and arthritic-type reactions in their joints," she said. "And the problem is there's no treatment that is agreed on by the medical community to treat (late-stage) Lyme disease."
Although it's good news that California's lengthy drought is over, the wet weather over the last year has been a boon for the local tick population. Ticks love the moist weather and enjoy hiding under wet leaves and debris, Giampa said, and it's no surprise that the change in weather has led to more reported tick bites and a big increase in calls to the foundation.
Along with pouring millions of dollars into Lyme disease research at several universities, including Stanford, the foundation has been working with both small local clinics and large regional medical organizations like the University of California at San Francisco (UCSF) to ensure doctors are familiar with the signs of Lyme disease and know to ask the right questions -- like whether the patient has recently hiked along the Peninsula's open space preserves. But getting local doctors to be cognizant of the disease, particularly at Stanford Health Care, has been the "most frustrating" part of the foundation's work, Giampa said. Primary care doctors simply don't look for the disease unless you push them.
Requests for a response from Stanford Hospital went unanswered as of the Voice's press deadline on Wednesday.
Nelson, who announced her pilgrimage as a way to raise funds for the foundation last month, said it's a frustrating situation because there's still not a lot of research on the disease, the symptoms aren't always readily apparently and the unreliable, multi-step diagnosis can get pretty expensive. But early detection is paramount is keeping the disease from progressing, putting doctors in a bind, she said.
Giampa described the foundation's education and outreach campaign as just as important as the research, and that they've trained outdoor educators to teach more than 200,000 Bay Area children about ticks and Lyme disease prevention -- piggy-backing on the required outdoor curriculum in sixth and seventh grade. Slowly and steadily, she said, the foundation is changing the way Bay Area residents and doctors alike think about Lyme disease.
"We just need to chip away at it more and more, until it's mainstream, that Lyme is here, and if someone comes in with a rash and has been hiking, for doctors to ask the questions and think about Lyme," she said.
Information about the Bay Area Lyme Foundation is at bayarealyme.org. Anyone interested in Nelson's fundraiser can go to her Gofundme page at tinyurl.com/y78skdd6.