Last summer, 11-year-old Gus was beyond excited to attend his first Boy Scout campout without his parents.
“Me and my husband believed he’d be fine on the trip because he’s super independent, but I remember telling my husband I was worried about ticks because how often does an 11-year-old reapply spray?” Gus’s mom, Lesley, explained.
Nevertheless, she and her husband let their son venture off from Illinois to upper Wisconsin for a week away over the Fourth of July holiday.
When Gus returned, Lesley said they did a “tick check from head to toe” but found nothing and figured he was “in the clear.”
However, near the end of July, Gus came down with a high fever and a migraine that wouldn’t go away. After checking in with his pediatrician, Lesley chalked it up to a virus. But when his headache persisted after a week and a half, they went back to the doctor, who suggested giving it another day before sending Gus for an MRI to rule out a tumor.
To Lesley’s relief, her son’s headache was gone the next day. Since the family was heading to Michigan for vacation, Gus’s pediatrician suggested he get the MRI when they return. Yet, as soon as the family arrived in Michigan, things took a turn for the worse.
“I looked across the table at Gus and I noticed he tried to take a drink and he couldn’t get his mouth to work. It was hanging low. He said one side of his face felt weird,” Lesley said.
She rushed him to the nearest emergency room. By the time they arrived, Gus couldn’t blink or close his left eye. His condition was diagnosed as Bell’s palsy.
Over the course of the week, he continued to deteriorate.
“By the time we got home from Michigan, he almost couldn’t walk. His hips, knees, ankles, and lower back were in so much pain that he said it felt like someone had a vice on all his joints,” Lesley said.
On their first night back home, Gus couldn’t sleep and woke his mom, so she took him downstairs to watch TV.
That’s when Lesley noticed her son’s legs, chest, and back were covered with a bull’s-eye rash — a common symptom of Lyme disease that can occur from 3 to 30 days after an infected tick bite and usually doesn’t itch or cause pain.
In the morning, Lesley took Gus back to his doctor. By the time they arrived, the rash was gone. Thankfully, Lesley thought to take pictures of the rash the night before and the images prompted Gus’s pediatrician to test him for Lyme disease right away.
Complex journey to diagnosis and treatment
Gus’s pediatrician gave him two tests: the enzyme-linked immunosorbent assay (ELISA) test, which is commonly used to detect Lyme disease, and the Western blot test, which is often given to confirm Lyme if the ELISA test is positive.
A few days later, Gus received a diagnosis of Lyme disease. Lesley said the family was happy to finally have identified the problem, and she believed her son would soon be on the road to recovery.
Gus’s pediatrician collaborated with a children’s hospital in Chicago to determine he needed 30 days of doxycycline, an antibiotic commonly prescribed to treat Lyme.
“He started feeling better immediately but did have some lingering pain in his hip and he wasn’t totally himself. He tossed and turned all night long and his energy was pretty low,” Lesley said. “I told myself these were all happening because he was growing. I just wanted to [believe] we beat the Lyme.”
However, when Gus’s symptoms persisted after he finished the antibiotics, Lesley started to advocate and research for her son. A friend who had been given a Lyme diagnosis referred her to a Lyme Literate doctor (LLMD) who specializes in the disease.
“From that point on, I got hungry for knowledge. I trusted our doctors but wanted to make sure we were doing the best we could for Gus,” said Lesley.
She learned that the Lyme bacteria replicates in the body every 14 days, which is why many doctors prescribe 30 days of antibiotics. However, she also learned that for some people that’s not enough.
Dr. Daniel Cameron, an expert in Lyme disease, says that many people with Lyme only need 30 days of antibiotics, but 1 out of 3 people treated early for the disease will still have complications.
“I’m most concerned about that one out of three who remains ill,” Cameron told Healthline. “For some, it can last up to 10 years and when you’re at school, it can mess up your ability to concentrate in the classroom or participate in sports or have a life with friends.”
Those were the fears Lesley had for Gus. Since he became ill over summer break, he didn’t miss school, but as an active child, he missed out on sports and hanging out with his friends.
“Sports are his life, but he lost 12 pounds and we had to cancel sports camps last summer. He [started wondering if] he’d ever [get to] play again,” Lesley said. “I’d constantly remind him that’d I’d do everything I could to keep it from stopping him.”
Approximately one month after Gus finished his 30-day supply of antibiotics, he was still struggling with symptoms and Lesley took him to see the LLMD. Because ticks that carry Lyme can also carry other infectious organisms through the same bite, the doctor tested Gus for coinfections. Turns out, Gus was positive for two types of Bartonella bacteria.
“I had never heard of coinfections and learned so much from this doctor,” Lesley said. “She confirmed that 30 days of antibiotics wasn’t enough for Gus. She was optimistic that we caught it early, but she made it clear that everyone’s body fights it differently.”
It’s because of this difference that Cameron says screening for coinfections is so important. “Many patients aren’t aware that coinfections exist. Many doctors are and will order tests for them, but often the tests aren’t reliable. That’s why carefully monitoring patients over time is important.”
Gus’s doctor began a regimen of three antibiotics, as well as probiotics, herbs, and supplements last November.
Advocating to calm controversy
Today, Gus is still taking antibiotics but Lesley said his health has greatly improved and he should be done soon.
“He just competed in track on the state level which is amazing. As I watched him run, I looked like a racoon because I was blubbering,” she said. “He’s overcome a lot since July. As a parent, those first few months were the darkest days. We didn’t know what he had and then we didn’t know if he’d be alright.”
Over the past year, Lesley says she’s grown a lot as well and hopes sharing her family’s struggle will help others who find themselves in the same situation.
“Not much is known about this disease, so as a parent you have to keep asking questions and finding information and advocating for your child,” she said, noting the frustrations they encountered while trying to treat Gus.
Part of the frustrations Lesley felt were due to a divide within the medical community.
“Some doctors don’t believe that children have chronic issues from Lyme, no matter what the published literature says,” Cameron explained. “Some physicians disagree on what to call [complications]. I use the term chronic Lyme disease, whether there’s a coinfection or not. Some people use other terms.”
Cameron also points out that while early leaders in Lyme disease were thorough in their understanding and managing early Lyme, they lacked knowledge of the chronic complications that can accompany the disease.
“Today, the published literature is very descriptive on all the problems that happen. It’s just that doctors are divided and it’s not clear why there’s disagreement on something that’s so common,” he said. He added that the understanding of what infections ticks carry is another barrier. “There are so many strains of Lyme and other infections in a tick. Some infections like Babesia can’t be treated with doxycycline and need to be treated with a parasite medicine. So much of the complexity and difficulty is knowing what’s in the tick without even looking at the child that was bit,” he explained.
Another complication of Lyme disease treatment is the worry many in the medical community have surrounding antibiotic overuse. Doctors can lose their license for overprescribing antibiotics and it’s a fear that can contribute to less-effective treatment for patients.
“We understand that we’re trying to cut back on antibiotic use, but if you have a child that’s sick, and with so many complexities of infection in a tick and plenty of published literature that supports how complicated this disease is, you’d like to have the freedom as a doctor to treat your patients and not be limited,” Cameron said. “If doctors who treat Lyme had more freedom, we wouldn’t have so much frustration in the medical community.”
Lesley is doing her part to help change this.
“I know this is a big issue and that I’m just one mom. But my kid’s in a good place, and I felt a calling to spread the word about this disease. I’m ready to say I knew nothing about Lyme. It’s not something I wanted to know about but if sharing Gus’s story can help even one other person, it’s worth it,” she said.
Most of all, she hopes other parents learn that they can seek out doctors who specialize in Lyme disease.
“It can be an isolating disease if your child isn’t getting the treatment they need and if your doctors don’t know enough about it,” Lesley said.
While Cameron says that a pediatrician can effectively treat many children with Lyme, he points out that for the one out of three kids who are still ill after initial treatment, it’s a good idea to see a doctor who is familiar with complications of the disease.
What else can parents do to protect their children?
The Centers for Disease Control and Prevention has a list of preventive measures to avoid a tick bite but nothing is foolproof.
Cameron says the most important thing is to perform a tick check after your child is outdoors, and to remove a tick as soon as you see one.
“Kids still get bit and get the infection even with these recommendations,” Cameron said.
He notes Lesley did the smartest thing she could for Gus: become familiar with Lyme disease.
He encourages other parents whose children get a Lyme disease diagnosis to do the same. “[Learn everything you can] so if your child doesn’t do well, you know about other complications and symptoms of Lyme to look out for so you can be the advocate for your child.”