TEEN TAKEOVER: Life With Lyme Disease

A few years ago, Eleanor Aubrey began experiencing chronic, painful headaches, body aches and fatigue. Her trips to doctors yielded mixed results. One general practitioner thought she had simply gotten sinusitis, while a doctor at the Philadelphia Children’s Hospital was temporarily convinced that she had a tumor.

Two-and-a-half years after symptoms first started, Eleanor, 15, was diagnosed with late-stage Lyme disease.

She suspects she contracted it from a tick bite.

Now her daily routine is very limited. Like any other teenager, she is usually exhausted in the morning, but she also sleeps in the afternoon. Homework and dinner round out her day.

“During school, it really doesn’t affect me that much,” Eleanor said.

Eleanor said that she always feels pain mostly in the form of a dull headache, which can randomly spike now and then during the day. Plus, her spine and joints often ache. As is true with most diseases, the more fatigued she is, the more noticeable the pain.

“It’s upsetting because sometimes I just feel emotionally defeated,” she said. “I never know when it will get better.”

Elizabeth Aubrey, Eleanor’s mother, said that the feeling of helplessness is the most difficult to accept. “It’s frustrating to have a loved one who is ill that you can’t help,” she said. “It’s very tough to deal with. Not all doctors are supportive of the diagnosis.”

As of now, there are many treatments but no cure for Lyme disease. Eleanor ingests about 20 pills per day, on average. These tablets treat other side infections she may get, act as antibiotics and anti-depressants, as well as replenish beneficial bacteria.

For instance, Aubrey once took Mepron to treat an infection. As she puts it, this “phonebook-yellow” drug is usually given to malaria victims. Other medications cause a loss of appetite or weight gain.

Eleanor said her medical expenses are “exorbitant” and many are not covered by insurance.

Drugs such as Mepron can cost up to $1,000 per bottle. This expense comes in addition to payments for medical visits, tests and other ills.

Eleanor has made quite a few physical sacrifices in order to deal with the effects of Lyme disease. She would like to play soccer and act in the musicals at Dallastown Area High School, but said, “I can’t run because it puts so much stress on weight-bearing joints. . . . Everything is limited.”

But those who know Eleanor say she has remained positive throughout the ordeal.

“She’s still upbeat and happy,” said Melanie Stover, a sophomore at York Country Day School. “I want to be able to relate, but it’s hard when you don’t take (about) 18 pills a day.”

Joanna Myers, an eighth-grader at the Christian School of York, said the disease hasn’t really changed Eleanor. “She takes it pretty well . . . compared to what I would do.”

And Eleanor really doesn’t know how the disease will progress. Death from Lyme disease is extremely rare, but the bacteria that cause it never leave the body. For the moment, the uncertainty lies in how long it will take for her to get better.

“Some people never get better. And you never know if the antibiotics and IV made it better or it just went away,” she said. “As of now, people don’t know that much about Lyme disease.”

Eleanor’s advice for others is simple: “If you have the symptoms, go to a specialist. This disease has exploded in our region. Don’t believe everything you hear tests are unreliable. I got six negative blood tests, even though they say I have (the disease).”