Mountain View resident Debbie Nelson recently turned her vacation in Spain and Portugal into a mission, walking a 155-mile stretch of the Camino Portugués last month while raising money for and educating people about Lyme disease.
“I was planning to do this as a vacation, and then as I was thinking about it, I thought, ‘If I could raise money doing this for Lyme disease, I’m going to do it,’” she said. “And then I also wanted to talk to people from different parts of the world to see what they’re doing for it.”
Nelson lost her cousin Jane Davis to Lyme disease last December. She said the Mountain View native was a young and vibrant mother when she contracted the disease, likely from a tick in her Butte County backyard, more than 20 years ago. Davis went undiagnosed for two years – suffering an assortment of symptoms that included headaches, seizures, warm skin and loss of appetite. Nelson said that by the time her cousin actually received a diagnosis, it was too late.
“She went from being so vibrant – (and) to see her deteriorate like that, it was just heartbreaking,” Nelson said.
According to the Centers for Disease Control and Prevention, Lyme disease is an infection caused by bacteria transmitted from ticks to humans – and it’s on the rise. A 2013 CDC study revealed that there are approximately 300,000 cases reported each year, 10 times the number previously reported. Lyme disease is also becoming more prevalent in California.
Lyme on the rise
Linda Giampa, executive director of the Bay Area Lyme Foundation, said the organization in 2014 conducted a tick sweep of some of the region’s most popular hiking trails – and the results were shocking.
“The rates of prevalence of Lyme disease in ticks was much higher than people had thought previous to that,” she said.
Giampa said Lyme is usually considered an “East Coast disease,” so people don’t check themselves for ticks or visit the doctor when they experience symptoms. She also noted that doctors in the area often don’t test for the disease or prescribe antibiotics for it. In fact, a misdiagnosis was the reason Giampa got involved with the Bay Area Lyme Foundation.
“My best friend was misdiagnosed for about eight years, and she was diagnosed with multiple sclerosis,” she said. “After seven and a half years of being misdiagnosed and after going to 17 different doctors, she was diagnosed with Lyme disease.”
That’s what the Bay Area Lyme Foundation is working to prevent. It supports 26 institutions throughout the country searching for a cure and a better diagnostic tool. And the research is exactly why Nelson chose to donate to the foundation. On her GoFundMe page, she’s raised nearly $4,000 for the disease. Local realtor David Troyer of The Troyer Group has vowed to match all donations.
Journey for Lyme
During her 13-day hike in Spain and Portugal, Nelson sported the Bay Area Lyme Foundation name and website address on her back. On the front of her shirt was her new slogan: “Lyme disease ticks me off.” She said the shirt served as a conversation starter, prompting discussion about the disease with people from around the world.
“I found out that in Poland and (the Czech Republic), they mark their forests where they have ticks with Lyme,” she said.
Nelson plans to continue raising money for the foundation as long as she can and urges people to check themselves for ticks and ask their doctors to test for Lyme if they think they have it.
“Hiking is one of my favorite things to do, and in these hills, there’s Lyme,” she said. “But I don’t want to have to stop doing it. So I just feel like if you’re really conscious and aware of it, and take the precautions that you need to take when you’re hiking … that’s being preventive.”
Visit lymediseaseticksmeoff.wordpress.com for more information on Nelson’s trip and fundraising mission.
For more information on Lyme disease, visit bayarealyme.org.