Tick Trauma: Real Stories of Upstate NY Kids and Lyme Disease

Local Families Expose the Lingering Effects of Lyme — and the Fight to Be Believed

By Allison Kenien

Last summer 15-year-old Ryan* returned to Central New York after a sailing competition with a 104-degree fever. His pediatrician suspected Lyme disease and sent him to the emergency room for testing. But the attending physician at the hospital dismissed that possibility because Ryan didn’t have the tell-tale rash. Instead of starting treatment, he ordered a Lyme test that would take weeks to process and sent Ryan home.

In the days that followed, Ryan’s condition worsened. Despite Tylenol and aspirin, his fever persisted between 102 and 104 degrees, and he could hardly stay awake. A family friend who was familiar with Lyme disease’s elusive nature urged a second visit to the hospital. He helped the family push for antibiotics and additional testing.

By then, Ryan had been sick for over a week. He finally tested positive for Lyme disease and began a month-long course of antibiotics. His symptoms began to subside, though numbness and pain in his hands lingered. Full recovery took several months.

“We were very lucky that he got so sick and that we had a friend who was well-versed in Lyme,” Ryan’s mom said. “We have other friends who have had Lyme and … were diagnosed many months or even years later when they started having joint problems and other terrible symptoms because they were not initially diagnosed.”

Despite New York being one of the highest-risk states for tick-borne illnesses, early and accurate diagnosis remains a challenge. Families can find themselves fighting to be believed and for their children to be properly treated.

When Lyme Goes Untreated

When tick-borne diseases are not caught or handled effectively, the consequences can be life-altering for the patient and their family.

That’s what happened to Sandra* who started having trouble focusing, anxiety, mood swings, anger, constant migraines, and even fainting spells when she was nine years old. Her parents were worried, but no one could offer an answer. In fact, they received dismissive theories about her mental health including suggestions that she was spoiled and that she suffered from “only-child syndrome.”

The real problem had been overlooked. Sandra was bitten by a tick shortly before the symptoms began. She received a few days of antibiotics, which is far less than the current 14- to 28-day recommendation. Regardless of the small dosage, since she was given antibiotics, no one connected her physical and mental maladies to the bite.

Years of misdiagnoses passed before the family found an integrative medicine physician who recognized the signs of late-stage Lyme disease. The doctor also discovered that she had two additional tickborne infections. “He actually listened to me,” Sandra told her family tearfully after the first appointment. With a comprehensive treatment plan, including IV therapy, hyperbaric oxygen treatments, herbal supplements, and nutritional support, Sandra began to improve. But the medical bills piled up quickly.

Insurance rarely covers treatments that extend beyond the CDC’s recommended 21-day protocol, despite studies showing that up to 14% of patients continue to experience debilitating symptoms afterward, possibly due to lingering remnants from bacterial and parasitic cells.

Sandra’s aunt Cindy Joslin is a retired registered nurse and a volunteer community educator with the CNY Lyme Alliance. She says that families are often met with skepticism and even ridicule. “I go to the CNY Lyme support group once per month and it’s the same story over and over,” she said. “Kids are told, ‘It’s all in your head, you look fine, you just want attention’”

Joslin wrote a children’s book called Ginger’s Story to raise awareness and generate funds for education and research.

One of the biggest issues right now is diagnostic tools.

“The medical providers are trying, but there are no good tests,” Joslin says.

Studies have shown that the current testing standard misses between 50% and 60% of early cases. Left untreated, the infection can cause ailments like headaches, fatigue, body aches, rashes, fever, memory loss, joint pain, nerve

dysfunction, anxiety, and depression. Some children and teens are even misdiagnosed with psychiatric disorders when in reality their symptoms are infection-driven.

The Wrong Diagnosis

That’s what happened to Daniel* after he was bitten by a tick at age two and again at four. Both times he developed a bulls-eye rash, the most recognizable symptom of Lyme disease. Yet for each bite, his doctor gave him only one injection of ceftriaxone, a drug typically reserved for later stages of Lyme and administered daily over several weeks.

Daniel’s mom says that before the tick bites, he was pretty typical. “Actually, he hit all of his milestones super early,” she said. “But three months after his second tick bite, everything in our life shifted.”

Suddenly, Daniel had sensory issues, restricted eating, insomnia, cyclical vomiting, abdominal migraines, behavioral and social issues, anxiety, agoraphobia, and panic attacks.

“We went to everybody; we went to any specialist who would see us,” Daniel’s mom said. Eventually, the family connected with an integrative medicine physician who specializes in Lyme. He ordered new tests, and Daniel tested positive for Lyme as well as several other tick-borne diseases. He was diagnosed with Lyme-induced PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), a condition that causes the sudden onset of OCD, eating restrictions, anxiety, and other neurological issues following infection.

“Since we started treating the Lyme and co-infections, the neurological and psychological symptoms are almost gone — it's incredible,” Daniel’s mom said.

She encourages parents to advocate for their kids. “Follow your gut, question when things seem off, don't stop with one professional, keep researching,” she said. “You just have to keep going, even in the thick of it.”

For Central New York families affected by Lyme disease, the road to diagnosis and healing can be long, expensive, and emotionally draining. But by speaking out, they are helping to create a future where Lyme disease is recognized faster, treated more effectively, and no child has to suffer alone. Their advocacy can build a stronger, more informed community — especially when everyone takes the time to listen to their stories.

*The names of the children in this story have been changed to protect privacy.