Her Lyme disease went undiagnosed because of where she lives: ‘Doctors don’t believe’

When persistent headaches, brain fog and pain plagued 58-year-old Sarah Reid, she consulted various doctors to try to find answers. She eventually learned she had Lyme disease – a surprising diagnosis as 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 get Lyme disease.

“I had no idea what kind of symptoms Lyme disease could give someone or even the possibility that I could have Lyme disease,” Reid, from Santa Rosa, Calif., told TODAY. ‘HUI. “I knew that Lyme disease could be extremely debilitating and debilitating, and it shocked me to know that I had an illness like that. It was very emotional.

Headache, brain fog, pain

For years, Reid suffered from headaches, brain fog, aches and generally felt unwell.

“I just knew I was really sick, and I didn’t know why,” she explained. “I was shuffled through different wards and about a dozen different doctors, and felt like my symptoms were completely ignored.”

Reid is a horsewoman and enjoyed riding her horse on the trails. As her symptoms worsened, she quit competing and eventually even had to stop working.

Sarah Reid enjoys spending time outdoors. Since being diagnosed with Lyme disease, she has become more vigilant about checking her body and clothes for ticks.Courtesy of Sarah Reid

“If I do a little (physical activity) today, I’m going to end up on the couch all day tomorrow,” she said. “Not just because of the physical pain.” Yet no one could explain his continuing ailments.

“The headaches were the biggest (symptom). That’s really what got me to the doctor’s office and the hospital,” she said. “I suffered from a lot of brain fog and depression, unexplained allergies, pain and other confusing symptoms, and extreme fatigue.”

Doctors never considered Lyme disease.

“The biggest problem we see is that doctors don’t believe there is 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 there for decades,” Wendy Adams, fellowship director of the Bay Area Lyme Foundation, told TODAY. “There are probably thousands of cases of Lyme disease every year in California, and so they will see cases of Lyme disease. 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 due to the type of ticks that live in these areas. Lyme disease occurs more frequently 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 visited a doctor who was familiar with Lyme disease and tested her. When the results came back, she felt a mix of emotions.

“It was fear but also emotion (because) it confirmed that all the symptoms I felt could actually crystallize into a map of what’s going on in my body,” he said. she declared.

Adams said it’s been common for California residents to be diagnosed later.

“We often hear about delayed diagnosis, and doctors say to patients, ‘You can’t have Lyme disease. There is no Lyme disease in California,” she said. “California has great diversity in its ecology and that means the strains causing Lyme disease may be different than they are on the East Coast.”

Sarah Reid has competed in equestrian events before, but now that she has persistent symptoms of Lyme disease, she sometimes has to cut back.
Sarah Reid has competed in equestrian events before, but now that she has persistent symptoms of Lyme disease, she sometimes has to cut back.Courtesy of Sarah Reid

Reid never had what is considered a telltale symptom – the rash. It develops in about 70 to 80 percent of people infected with Lyme disease, according to the CDC. The rash appears between three and 30 days after the tick bite and begins where the tick was. But many people don’t see it or understand that it’s a symptom of Lyme disease. Also, the rash may not be the same for all cases of Lyme disease.

“We know from recent work in the Midwest, where a new strain was discovered, that each strain has a different rash. The rash doesn’t look like the typical rash you think of with Lyme disease,” Adams said. “In California we have a lot of different strains. We don’t know if these strains have a different clinical presentation because people don’t study Lyme disease in California.”

Reid does not know when she was infected. People diagnosed with Lyme disease shortly after being bitten by a tick are given antibiotic treatment for 10 to 14 days, which often eliminates their symptoms, Adams said.

But for patients like Reid, “treatment options are really limited. They don’t work for everyone,” Reid said. “It’s a difficult process.”

With Lyme disease, getting a diagnosis as early as possible is crucial.

“The longer a person goes undiagnosed and untreated, the more likely they are to have persistent symptoms,” Adams said. “This delay in diagnosis has a direct impact on someone’s chances of getting better after a short course of antibiotics.”

Sharing your story to help others

Raising awareness about Lyme disease in California has helped Reid deal with the frustration she feels. She has donated blood and urine to the Bay Area Lyme Foundation Biobank and urges others with Lyme disease to do the same.

“I really encourage others to become more aware of Lyme disease and co-infections and to consider helping, like with the biobank I was involved in, to advance some of the much-needed research to help with the awareness, education and early intervention diagnostic and treatment strategies,” she said. “We need better therapies and accurate diagnostics.”

Adams said the biobank helps his organization learn more about Lyme disease.

“The way to get better diagnoses is to study patient samples,” she said. “These are really important studies to understand: What is going on? What is this infection of this joint or part of the body? And n°2, how are these different stages of the disease then diagnosed?”

Two years after being diagnosed, Red found a tick embedded in his skin and removed it. She sent him to the county health department to be tested just to be safe. It was negative for Lyme. But the experience felt ‘gross’ and led her to fear she might develop another tick-borne illness. Luckily, she didn’t.

When Reid goes out, she uses DEET-based insect repellent, wears light-colored clothes — so ticks are easier to see — and gaiters, and checks for ticks when she gets to the car. At home, she undresses, looks in the mirror and showers. She has learned to protect herself since her diagnosis and hopes her experiences will educate others in California about their risk for Lyme disease.

“There is definitely a lack of public awareness. I didn’t know until I met the 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 the Midwest and East Coast.”

Reid wants people to think differently about tick-borne diseases.

“It’s not just an East Coast phenomenon, and Lyme disease isn’t just, ‘Get some antibiotics and get over it.’ For some of us, we never even saw the tick that got us,” she said. “There is a misconception among medical professionals about whether or not Lyme is even something.”

“It’s hard to defend yourself when you’re not feeling well,” she added. “It’s very moving to finally feel heard and listened to.”