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Researchers recently published a paper on a 10-year study that reveals the need for improved diagnostics and early detection of Lyme disease. The study was completed using samples collected from over 200 participants by the Portola Valley-based Bay Area Lyme Foundation’s Lyme Disease Biobank.
The organization was founded in 2012 by Portola Valley residents Bonnie Crater and Laure Woods, who both have immediate family members and friends with debilitating cases of Lyme disease. During this time, it was common to hear that Lyme disease was not in California, but Crater and Woods had their own suspicions.
The pair recruited scientists to test the ticks in Bay Area open spaces and found that the western black-legged ticks here were infected with a bacteria that causes Lyme disease in humans.
“Lyme disease is not just an East Coast problem. It’s also a problem in California,” said Liz Horn, principal investigator of Lyme Disease Biobank.
In 2014, the foundation launched its Lyme Disease Biobank which is designed to help researchers access blood, urine and human tissue samples to use in testing. The biobank aims to support research toward better diagnostics and treatments of tick-borne diseases. The year it was created, over 200 samples were collected from people with signs and symptoms of early Lyme disease on the East Coast and Midwest.
The biobank has since expanded to include more than 1,250 participant samples — samples that are also being collected from people with persistent Lyme disease in California.
According to the study, only 23% of participants showed signs of early Lyme disease were positive by the Centers for Disease Control and Prevention ‘s standard two-tiered test for Lyme disease at the time of sample collection, yet three months later, one in five participants reported ongoing symptoms attributed to the disease. Symptoms include joint pain, muscle aches, fatigue, memory loss and confusion.
“Some of these symptoms could have quite a big impact on their lives,” said Horn. Despite these chronic symptoms, only 35% of the participants sought care from their health providers.
The study proved that up to 70% of cases of early Lyme disease are overlooked. Horn explained that this is due to the current diagnostic methods, which focus on immune response. In order for the test to recognize the presence of Lyme disease, there has to be enough time for the human body to react to it.
When Lyme disease is detected, patients are prescribed antibiotics to treat the disease, however many continue to experience symptoms.
The study recommends that healthcare providers follow up with their patients immediately after they conclude their antibiotic treatments to observe whether their symptoms have resolved. If not, researchers encourage doctors to immediately re-treat with antibiotics or prescribe a longer course of treatment, according to Horn.
“We need better diagnostics, (one) that is a direct detection test that actually detects the bacteria, so you can tell if you have an active infection or not,” she added.
Horn believes awareness is key in order to properly treat and prevent ongoing symptoms of Lyme disease. “You have to be tick aware,” she said.
Early signs of Lyme disease may present as an erythema migrans rash, often resembling a bullseye. According to the CDC, early symptoms can show up three to 30 days after a tick bite. In the absence of a rash, individuals may experience a fever, chills, headache, fatigue, muscle aches and swollen lymph nodes.
“It’s important that people are aware that you can get Lyme disease in California. You could be traveling and get exposed too,” Horn said. Studies have also found that ticks can be found in grass and shrubs near beaches, although not in the sand.
The San Mateo County Mosquito and Vector Control District described the western black-legged tick as small, dark-colored and usually found in tall grasses at the edges of trails. In order to stay tick-free, the organization advises the public to stay in the middle of trails and to avoid brushing up against tall grasses.
After a walk outside, checking yourself and your pets for ticks in areas such as the scalp, armpits and back of the knee is recommended. Using an EPA-registered tick repellent can also help reduce the risk of tick bites. Ticks can be removed with a pair of tweezers or with a tick removal tool.
For more information on Lyme disease prevention visit bayarealyme.org/resources/prevention-tools.
