Lyme disease is a bacterial infection that can cause a range of symptoms, such as fatigue, joint pain, fever, and neurological problems. It is usually transmitted by the bite of an infected tick, but not always. Sometimes, people can get Lyme disease without ever noticing a tick bite or a bull’s-eye rash, which are the common signs of the infection.
This is what happened to Olivia Goodreau, who was diagnosed with Lyme disease after visiting 51 doctors over 18 months. She had symptoms such as fatigue, blindness, and pain. She never had a tick bite or a rash. She started a nonprofit and wrote a book to raise awareness and help others with Lyme disease.
Olivia’s story is not unique. According to the Centers for Disease Control and Prevention (CDC), about 10% to 20% of people with Lyme disease do not recall being bitten by a tick. This can make the diagnosis more difficult and delay the treatment, which can lead to chronic complications.
“Lyme disease is a great imitator. It can mimic many other diseases and conditions,” said Dr. John Aucott, director of the Johns Hopkins Lyme Disease Clinical Research Center. “The diagnosis of Lyme disease is based on a combination of clinical signs and symptoms, exposure history, and laboratory tests.”
The CDC recommends that people who live or travel in areas where Lyme disease is prevalent should check themselves for ticks daily and remove them as soon as possible. They should also watch for symptoms of Lyme disease for up to 30 days after a tick bite. If symptoms occur, they should seek medical attention promptly and mention the tick exposure.
However, some people may not have any symptoms or may have mild or nonspecific symptoms that can be easily overlooked or mistaken for other illnesses. For example, Olivia initially thought she was just tired from school and vacation. She also had other health problems that confused the doctors.
“I had abnormally large adenoids that caused me to have sleep apnea,” she said. “I also had celiac disease that I didn’t know about until later.”
The best way to prevent Lyme disease is to avoid tick bites by wearing protective clothing, using insect repellents, and avoiding wooded and bushy areas with high grass. However, if you suspect you have Lyme disease, even without a tick bite or a rash, you should not ignore your symptoms and seek medical help as soon as possible.
Lyme disease can be treated with antibiotics if caught early. However, some people may develop persistent or recurrent symptoms after treatment, which is known as post-treatment Lyme disease syndrome (PTLDS).
“There is no definitive test for PTLDS,” said Dr. Aucott. “We don’t know why some people don’t get better after treatment. It could be due to residual inflammation, immune dysfunction, or persistent infection.”
Olivia is one of those people who still struggle with PTLDS. She has undergone numerous treatments to manage her condition, but she still experiences pain, fatigue, brain fog, and seizures.
“I have good days and bad days,” she said. “Some days I feel like I can do anything and some days I can barely get out of bed.”
Despite her challenges, Olivia has not given up hope. She has become an advocate for children with Lyme disease and started a nonprofit organization called LivLyme Foundation when she was 12 years old. She has also written a book about her experience called “My Invisible Enemy: How I Battled Lyme Disease”.
“I want to help other kids who are going through what I went through,” she said. “I want to raise awareness and fund research for better diagnosis and treatment of Lyme disease.”
Olivia’s story is an inspiration for many people who suffer from Lyme disease or other chronic illnesses. She shows that even without a tick bite or a rash, Lyme disease can be detected and fought with courage and determination.