Teen battling Lyme disease gets support from Sen. Blumenthal

Max Wheeler isn’t starting Trumbull High with the rest of his class, but he’s determined to walk those long and winding halls as soon as he can.

The 13 year-old is still undergoing treatment for Lyme disease, which has left him significantly weakened, but he’s looking stronger than he did a few months ago, when he was largely confined to a wheelchair and receiving IV treatments.

“It’s been very difficult, being isolated for quite a bit of time,” Max said.

Last week, his wheelchair was folded up in a corner and Max sat on his living room couch, discussing his journey and his desire to raise Lyme awareness, with U.S. Sen. Richard Blumenthal. It was also a chance to thank the senator for helping the family get treatment coverage from their insurance company.

Blumenthal’s intervention persuaded the insurance company, Aetna, to cover some of Max’s treatments.

Max’s parents, Doug and Maria Wheeler said they spent nearly everyday on the phone with their insurance company trying to get coverage for intravenous doxycycline treatments, prescribed by Dr. Charles Ray Jones, a doctor specializing in chronic Lyme disease.

“We were denied three times by insurance companies,” Doug Wheeler said. “They said it wasn’t medically necessary.”

Chronic Lyme is a controversial topic in the medical community.

So the family, scared to wait longer, paid for it out of pocket, reaching into retirement and Max’s college fund. The costs were about $5,000 a month.

Hearing that Blumenthal was a Lyme disease advocate, they reached out to his office. Blumenthal’s office talked to the insurance company and the family received some coverage.

“No one should have to endure what you’ve encountered — the pain alone, apart from the economic strain,” Blumenthal said. “I feel so passionately about providing assistance in cases like this and Aetna decided to step up here and do the right thing.”

Max and his parents also want to see Lyme awareness increase among physicians and the general public. When his symptoms, including intense pain, started October 2012 the family visited 19 doctors before they finally got an answer and a diagnosis of Lyme and co-infections.

“My mother used to say, years ago ‘let’s do a tick check for Lyme,’” Max said. “But I never realized how serious it was.”

Blumenthal said he is working on legislation in Washington to improve Lyme research and support.

The legislation has strong support among New England senators and a few from other parts of the country.

“This scourge is spreading,” Blumenthal said.