Trumbull teen battles Lyme disease, aims to raise awareness
After months of excruciating pain, 19 different doctors and countless tests, 13-year-old Max Wheeler was diagnosed with Lyme disease.
Max, who was an honors student at Hillcrest Middle School before his symptoms made it impossible for him to attend school, is now in the midst of treatment. But while he is often too weak to walk and hooked up to IVs as part of his treatment, he wanted to get an important message out.
“I’m just hoping more people will learn about it,” Max said of Lyme disease. “A lot of kids are going through this.”
May is Lyme Disease Awareness Month.
His parents have watched Max’s life get put on hold because of the disease and co-infections caused by a tick. They say he experiences regular pain and insomnia and struggles to remember things.
“It has stopped his life,” his mother, Maria Wheeler, said. “He is basically just a shell of his former self.”
It started back in October when Max was complaining of symptoms like a sore throat, pain and that he was nauseated all the time. As they struggled to get answers, he was tested for things like leukemia, meningitis and the flu. One doctor even suggested that the symptoms might be in Max’s head and the family should consider Prozac.
“As a parent you know your kid and you know that’s not what it is,” Wheeler said. “Out of desperation we found a doctor who specializes in infectious disease in children.”
That doctor was Dr. Charles Ray Jones in New Haven. Dr. Jones diagnosed Max with Lyme borreliosis, neuroborreliosis, Bartonella henselae, Lyme encephalopathy, and ehrlichiosis.
Wheeler said she and her husband never knew the controversy or the politics surrounding Lyme disease until their son was diagnosed.
There is general agreement in the medical community that appropriate antibiotics in the early stages of Lyme can lead to a rapid recovery for patients. But there is considerable controversy over the existence, prevalence, diagnostic criteria, and treatment of “chronic” Lyme disease.
Lyme disease is the most commonly reported tick-borne disease in the country, with the highest incidence among the 5 to 14 age group, according to the Stamford-based Lyme Research Alliance. For every case of Lyme disease reported, the Centers for Disease Control estimate that 10 go undetected. The Lyme Research Association says that can lead to severe long-term consequences.
Diagnosing the disease can be difficult.
“Lyme disease blood testing is fraught with problems and, at best, should only be an adjunct to the clinical diagnosis of the disease,” according to the alliance’s website. “Indeed, the Centers for Disease Control and Prevention (CDC) recommend that the diagnosis remain a clinical one, based on your symptoms and history, and that blood tests should only be used to provide supporting evidence for the diagnosis.”
The insurance company has denied coverage to the Wheeler family three times. Maria Wheeler says it’s because there is a lack of research on her son’s condition.
“We are paying out of pocket and it’s thousands of dollars of a month,” Wheeler said.
Max’s grandfather has reached out to U.S. Sen. Richard Blumenthal, who has been an advocate for “chronic” Lyme disease patients in the past.
Max is undergoing his fourth week of treatment as prescribed by Dr. Jones, and the family says he could be undergoing it for months, though the doctor and his family are hopeful he will make a recovery.
“I want to go back to school — I miss it,” Max said. “I haven’t seen my friends in months.”
His family had planned to take Max to visit his former baseball team last weekend. He is often so weak, his mother said, that he doesn’t have the energy for visitors.
Max and his family want to see more research get done on Lyme and more people become aware of how to prevent it and treat it early on.
“My pet peeve is I was always told to look for the bull’s-eye,” Wheeler said of a tick bite. “But it turns out a lot of the time there isn’t a bull’s-eye.”
The CDC has a list of tick bite prevention recommendations at cdc.gov/lyme . To learn more about the Lyme Research Alliance, visit lymeresearchalliance.org .
“I had no idea the devastation this disease could cause,” Wheeler said. “I knew it was a bad disease but had no idea. Now I think about how I wish I had known more.”