I-Team: Lyme Disease Confusion Ensnares Sick Patients in Treatment, Insurance Complications

When Pope Francis touched down at Kennedy Airport, 12-year-old Julia Bruzzese was there to greet him. Sitting in her wheelchair, the pontiff put his hand on her forehead and blessed her.

“It means that he’s going to give me a miracle, to walk again,” the teen told NBC 4 New York afterward on Oct. 24, fighting back tears. “I know I will walk again because of him.”

And a miracle of sorts did happen, at least, in her opinion. 

Dr. Ronald Stram in upstate Delmar, just outside Albany, was watching Julia and reached out to her family because he believed he could help.

“It broke my heart,” said Stram. “I knew that she had a suspicious disease that had gone undiagnosed and I think that Lyme is a very complicated disease and it was one to at least explore.”

It was in June of this year that Julia, who was once vibrant and athletic, suddenly was unable to walk. A few specialists believed she had Lyme disease, but her blood tests didn't support that.

But Stram believed he could help her. Julia has been treated for a month and a half now, traveling from her Brooklyn home to Stram's office in Delmar. Three days a week, she receives antibiotics and nutrients intravenously. She believes she’s getting better.

“I’m starting to feel the bottom of my feet and wiggle my toes more," she said. "The miracle is coming and the pope made it happen."

But the young girl’s treatment might be cut short as she finds herself in the middle of an ongoing controversy.

The CDC estimates 300,000 people get Lyme disease a year in America. Ninety-six percent of the cases are reported from just 14 states, including New York, New Jersey, and Connecticut.

There is great disagreement on its diagnosis and treatment.

“We’ve seen numerous doctors, four different hospitals,” said Enrico Bruzzese, Julia’s father. “What’s so confusing is none of the doctors we saw had matching opinions.”

Bruzzese's insurance company, Emblem Health, has denied them coverage because Julia’s tests have come up "negative for Lyme disease."

Emblem Health, like most other insurance companies, refer to guidelines established by medical associations like the Infectious Diseases Society of America to determine when treatment is appropriate.

Dr. Gary Wormser of Westchester Medical Center is a lead author of guidelines for treating Lyme.

“In early Lyme disease infection, you may only get 1 out of 3 positives because it takes time for antibodies to produce,” said Wormser. “But patients who have been sick for months invariably will have a positive Lyme test.”

Wormser has not studied Julia's case but stands by the theory that she should have at least a minimum presence of Lyme antibodies. Stram showed NBC 4 New York Julia’s blood work, which shows some evidence of Lyme, but not enough to be covered by her insurance company.

In 2008, Connecticut’s then-Attorney General Richard Blumenthal uncovered serious flaws with the Infectious Diseases Society of America's process for writing Lyme guidelines, saying the panel "improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease."

The society was ordered to review their guidelines.

Lyme disease is often called the “great imitator” because it can look like so many other diseases, which is the problem Julia faced.

"We tested for everything else, spinal taps, you don't know how many MRIs," she said. "I knew something was wrong with me."

When tests didn't point to any specific ailment, doctors suggested psychiatric testing.

“It was an emotional time for me and my family, but I stayed strong," said Julia. “If it’s something else, what is it? Tell me, I want to get better.”

“This is compassionate care,” said Stram. “If someone else can offer treatment that can show a benefit, we are open. This is a 12-year-old girl who needs to be walking and living a normal life.”

In a statement, Emblem Health said, “The health and safety of our members is always our top priority. After our internal review, a subsequent independent third-party review determined that this treatment is medically inappropriate for this member.”

Emblem did offer to pay for a pic line -- a medical device that will make it easier for Julia to receive IV medicine -- but the cost of the antibiotics will not be covered and that could amount to more than $500 a week.

“I could stop giving her the meds, then what?” asked Enrico Bruzzese. “Go out and get her a better wheelchair? I feel like that’s what some doctors are saying, just go home and deal with it.”

Contact Us