It took 51 doctors to get to the bottom of her mysterious, yet common, disease.

When Olivia Goodreau was eight years old, something changed. She lost the pep in her step and started feeling abnormally sluggish. She was tired and couldn’t concentrate. She rested her head on her desk a lot at school. She just wasn’t herself anymore, but it was hard to explain. The symptoms would come and go, and most people didn’t even notice a change in the little girl. 

As Olivia describes it, “I started feeling very behind and slow…I was tired constantly…I couldn’t do any work.” 

At first, people just accused Olivia of looking for attention or complaining about nothing. But when she started passing out and losing her vision for short periods of time, it became apparent that this was more than just laziness. 

It was Olivia’s second grade teacher who witnessed firsthand one of these episodes of blindness. She immediately called Olivia’s parents and insisted that something was really wrong.

A Cry for Help

Olivia’s mother started pushing for answers, taking Olivia to dozens of doctors—but they were often not taken seriously and given suggestions such as to drink more water. One doctor suggested that Olivia have her adenoids taken out, and so she underwent surgery. When that didn’t help, still another doctor had her tested for Wilson’s disease.

When the genetic testing came back negative, a battery of other tests were ordered: CT scans, liver biopsies, upper and lower endoscopies. Dozens of other doctors dismissed the girl, insisting nothing was wrong. One even went so far as to diagnose Olivia and her mother with Munchausen’s syndrome and Munchausen by proxy.

“The doctors started to believe that I was making it up for attention because they couldn’t figure out anything else,” Olivia said. She felt defeated. Her mother didn’t know where to turn next, but she couldn’t give up. She continued to make appointments with doctors who would see her young daughter. Finally, at their 51st consultation, a doctor who took them seriously alighted upon an answer.

Disease Diagnosed

That doctor had seen similar symptoms before in a patient who was eventually diagnosed with Lyme disease. A Lyme test was ordered. It came back positive, and Olivia started a 30-day course of antibiotics. But nothing changed. In fact, her symptoms got worse.

“I was absolutely terrified,” Olivia remembered. “I think I was more confused than scared.”

Lyme disease is the fastest growing insect-borne, infectious disease in North America. It’s estimated that nearly half a million Americans contract a new case of Lyme disease every year, of which 40% will end up with long-term health problems. 

Two hundred children get Lyme disease every day. So why did it take 51 doctors for Olivia to get to a correct diagnosis? One reason might be that Olivia lives in Colorado, a state with very few cases of Lyme disease. In fact, it was while she was on vacation with her family at Lake of the Ozarks in Missouri that was infected with Lyme. Missouri has over 10 times as many new cases of Lyme disease documented each year than does Colorado. A doctor in Missouri might have been quicker to catch on to Olivia’s illness.

Olivia also didn’t have one of the most obvious signs of Lyme disease: a bullseye rash. And she never saw the tick on her body. But the symptoms that came later (fatigue, headache, malaise, blurry vision) are consistent with Lyme. The 51st doctor that saw Olivia recognized this and ordered the simple test that would change her life.

Relief did not come immediately, though. The first round of antibiotics changed nothing. Relieved to have an answer but worried about her future, Olivia continued to suffer in silence.

“I wasn’t able to go to school for many, many days, and then maybe one or two days it would be better, and then it would be worse,” Goodreau said. “We call those Lyme days because they can happen out of nowhere and they absolutely suck.”

A Better Solution

It wasn’t until a few year later that Olivia was introduced to Dr. Richard Horowitz, a doctor who specializes in Lyme disease. He put her on a regiment of 86 pills a day, followed by a “double dapsone” treatment. It’s a drug that was designed to treat skin conditions, reduce inflammation and stop bacterial growth. It worked. It worked so well that the doctor then prescribed a quadruple dapsone treatment. Olivia calls it nothing short of “amazing”. Her doctor now says she’s in remission.

“To hear the word remission after 11 years of having the illness, I wanted to cry,” Olivia said. “I am so glad that I did it.”

Now that she’s feeling better, Olivia wants to make sure that other children don’t have to suffer in silence.

“When you have Lyme disease, a lot of people don’t believe you. They’ll say, ‘Oh well you look fine.’ ‘You look alright.’ ‘You don’t look sick,’” Olivia explained. “As a kid, it’s great to hear and it’s also terrible.”

She’s written a book, But She Looks Fine: From Illness to Activism, and founded the LivLyme Foundation, a charitable organization that covers the cost of children’s Lyme treatments and donates money to research on the disease.

“I’ve have met so many kids who played soccer, like I did, or played football, now they’re in a wheelchair,” Olivia said. “Now they’re bedridden. Now they’ve dropped out of school. So, they are actively losing their childhoods.”

From her firsthand experience of the pain and uncertainty of having Lyme disease to her successful treatment, Olivia wants to share her story with others who will find hope and encouragement in it. But she also wants to bring awareness to the rapidly spreading disease and encourage scientists and doctors to find solutions. 

With awareness, it’s her hope that it won’t take any other child 51 doctors’ visits to get help.