Tuesday, January 21, 2014

Emily's Story Featured On KSL

November 12, 2012

Woman walks again after missed Lyme disease diagnosis

FARMINGTON — The low point came for Emily Koster when the mom of three woke up one morning with her limbs locked, unable to move.

It had been seven years since she had first started having problems. It started with her hands and feet, as her joints started to lock up every night. Eventually, Koster was diagnosed with rheumatoid arthritis — by which time she was "pretty much crippled" — and prescribed steroids, which were effective enough that after three years, she was able to take up running and began training for the Wasatch Back.

At the start of every winter, though, she found herself bedridden, and it got worse every year, starting earlier, ending later and causing even more pain.

In spring of 2011, Koster went to a doctor with extreme back pain. She said doctors seemed to roll their eyes at her, even telling her it was a psychological problem, although more and more, signs were pointing to Lyme disease. She and her husband, Kent Koster, visited doctor after doctor over the following months, trying to find someone who would stop prescribing steroids and just listen.

"It's very aggravating to have doctors tell you it's all in your head," she said. "But at this time, antibodies finally started showing up, eight years later. That's a long time."

By February 2012, Koster had worsened to the point that she was unable to do anything by herself and relied on her husband for every movement.

"I couldn't feed myself; my arms were locked straight," she said. "My ankles couldn't flex. I couldn't walk."

Koster said she struggled with knowing that her children were missing out on things because medical bills prevented them from participating in extracurricular activities. And on top of that, they had to step up and help her when she could not help herself, bringing her extra blankets or even just a glass of water. It's hard seeing that because of me, everything changed for them," she said. "No child should have to take care of their mom."

The Kosters had continued to hop from doctor to doctor, trying to find someone who would be willing to treat the Lyme disease that even tests showed Koster had. Kent Koster said he believes it took so long to find a doctor willing to treat his wife because Lyme disease is so controversial. 

Definitions of Lyme disease vary, and according to the official definition put together by the Infectious Disease Society of America, chronic Lyme disease does not exist, meaning insurance companies don't want to hear from doctors who insist a patient has chronic Lyme disease.

It was with that in mind that the Kosters continued their search for a doctor, and In February, they finally found someone willing to do more than just prescribe steroids. Koster began daily intravenous treatments and was taken off all other medication.

After two weeks, she was able to stand on her feet. During the third week, she could take baby steps. A few weeks later, she could walk from her treatment room to the front desk. Now, on a good day, she can walk to the park down the street from where the Koster family lives.

She may not be able to go long distances — yet — but they are steps in the right direction for someone who for years had doctors telling her "it's all in your head."

"I can't walk long distances, but I can walk somewhat. It's definitely better," she said. "I'm getting more and more to where I can function again and be a mom. I'm not back to normal, but I can see the light at the end of the tunnel. It's coming."

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