When the persistent headaches, brain fog and pain plagued Sarah Reid, 58, she visited various doctors to try to find answers. She eventually learned she had Lyme disease — a surprising diagnosis because she lives in California. While she was aware of other tick-borne illnesses common in the West, she didn’t realize that she could also contract Lyme disease.
“I had no idea what kind of symptoms Lyme disease could give someone or even the possibility I could have Lyme disease,” Reid, of Santa Rosa, California, told TODAY. “I knew that Lyme disease could be extremely disabling and debilitating, and it shocked me to know that I had a disease like that. It was very emotional.”
Headaches, brain fog, pain
For years, Reid experienced headaches, brain fog, pain and generally felt unwell.
“I just knew that I was really sick, and I didn’t know why,” she explained. “I was shuffled around to different departments and about a dozen different doctors, and I felt my symptoms were completely ignored.”
Reid is an equestrian and enjoyed riding her horse on trails. As her symptoms worsened, she stopped competing and even eventually needed to stop working.
“If I do a little bit (of physical activity) today I’m going to end up basically being on the couch all day tomorrow,” she said. “Not just because of physical pain.” Yet, no one could explain her persistent ailments.
“Headaches were the biggest (symptom). That was really what landed me at the doctor’s office and in the hospital,” she said. “I was experiencing a lot of brain fog and depression, unexplained allergies, pain and other puzzling symptoms and extreme fatigue.”
Doctors never considered Lyme disease.
“The biggest problem we see is that doctors don’t believe there’s Lyme disease in California or they think it’s so rare they’ll never see a patient with it, despite the fact that it’s been here for decades,” Wendy Adams, research grant director at Bay Area Lyme Foundation, told TODAY. “There’s probably thousands of cases of Lyme disease each year in California, and so they will see Lyme disease cases. They just don’t know they’ve seen the disease.”
Rocky Mountain spotted fever, anaplasmosis and Colorado tick fever occur in the western United States because of the type of ticks that live in those regions. Lyme disease occurs more commonly in the Northeast and upper Midwest, according to the Centers for Disease Control and Prevention, but it also exists in California. Adams said the first case was recorded in the late 1970s.
For years, doctors had no explanation for Reid’s failing health. She happened to visit a doctor who was familiar with Lyme disease and tested her for it. When the results returned, she felt a mix of emotions.
“It was fear but also emotional (because) it validated that all the symptoms that I’ve been experiencing might actually crystallize into a map of what’s going on with my body,” she said.
Adams said it’s common that California residents receive a later diagnosis.
“We often hear about delayed diagnosis, and doctors will tell patients, ‘You can’t possibly have Lyme disease. There’s no Lyme disease in California,’” she said. “California has high diversity in its ecology and what that means is that strains causing Lyme disease can be different than they are on the East Coast.”
Reid never had what’s considered a telltale symptom — the bullseye rash. It develops in about 70 to 80% of people infected by Lyme disease, according to the CDC. The rash appears anywhere from three to 30 days after the tick bite and starts where the tick was. But many people don’t see it or don’t understand that it’s a symptom of Lyme disease. What’s more, the rash might not look the same for every case of Lyme disease.
“We know from some recent work in the Midwest, where a new strain was found, that each strain has a different rash. The rash doesn’t look like the typical rash that you think of with Lyme disease,” Adams said. “In California, we have lots of different strains. We don’t know if those strains have a different clinical presentation because people aren’t studying Lyme disease in California.”
Reid isn’t sure when she was infected. People diagnosed with Lyme disease soon after being bitten by a tick receive antibiotic treatment for 10 to 14 days, which often eliminates their symptoms, Adams said.
But for patients like Reid, “there’s just really limited treatment options. They don’t work for everybody,” Reid said. “It’s a difficult process.”
With Lyme disease disease, getting a diagnose as soon as possible is crucial.
“The longer someone is not diagnosed and treated, the more likely they are to have persistent symptoms,” Adams said. “This delay in diagnosis directly impacts the chance that somebody will get better after a short course of antibiotics.”
Sharing her story to help others
Raising awareness of Lyme disease in California has helped Reid grapple with the frustration she feels. She donated blood and urine to the Bay Area Lyme Foundation’s biobank and urges others with Lyme disease to do the same.
"I really encourage others to become more aware of Lyme disease and the co-infections and to consider helping, like with the biobank that I participated in, help moving along some of the much-needed research to help with awareness and education and early intervention diagnosis and treatment strategies,” she said. “We need better therapeutics and accurate diagnostics.”
Adams said the biobank helps her organization learn more about Lyme disease.
“The way to get better diagnostics is to study patient samples,” she said. “These are really important studies to understand: What’s happening? What is that infection to that joint or that part of the body? And No. 2, how do we then diagnose these different stages of the disease?"
Two years after receiving her diagnosis, Reid found a tick embedded in her skin and removed it. She sent it to the county health department to be tested just to be safe. It was negative for Lyme. But the experience felt “gross” and caused her to worry she might develop another tick-borne condition. Luckily, she did not.
When Reid goes outside, she uses DEET-based bug repellant, wears light color clothing — so it’s easier to see ticks — and gaiters, and does a tick check when she gets to the car. At home, she strips down, checks herself in the mirror and then showers. She has learned how to protect herself since her diagnosis and hopes that her experiences will educate others in California about their risk of Lyme disease.
“There’s definitely a lack of awareness among the public. I was not aware until I actually met Bay Area Lyme foundation,” Reid said. “There’s also a lack of awareness about when ticks are most prevalent in our environment here because it’s different than in the Midwest and on the East Coast.”
Reid wants people to think differently about tick-borne illnesses.
“It’s not just an East Coast phenomenon, and Lyme disease isn’t just, 'Take some antibiotics and get over it.' For some of us, we never even saw the tick that got us,” she said. “There’s a misconception among medical professionals about whether or not Lyme is even something.”
“It’s difficult to advocate for yourself when you don’t feel well,” she added. “It’s very emotional to finally feel like you’re being heard and listened to.”
CORRECTION (Nov. 14, 2022 at 10:16 a.m. ET): An earlier version of this article misspelled Reid’s last name as “Red” in one reference.