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Reporter’s notebook

Relative’s illness spurred examination of Lyme disease

Andrea Raphael.

Photo courtesyof Raphael family

Andrea Raphael.

The call came while I was riding my bike.

“I have awful news,” my husband said as I struggled to hear him while undoing my helmet strap.

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Andrea was dead.

I sunk to sit on a nearby curb. Andrea was more than the wife of my husband’s first cousin: She was the person who grabbed my hand as I was introduced to the expansive family I had married into and didn’t let go of me. She was a force of energy and curiosity, a fantastic athlete, the kind of person who – and this really happened – set out to run a half marathon and finished a full one.

Until she became sick. It started around Christmas 2010. Andrea was tired – so tired the family first thought she had chronic fatigue syndrome. Her brain was foggy. She had to take a leave from her teaching job. Lyme disease was considered, but she never had the bulls-eye rash and she never tested positive. Doctors were flummoxed.

I saw her during this time; waif-thin and confused. “I get lost driving home,’’ she told me, smiling weakly, horrified.

As Andrea got sicker, she found a doctor who honed in on Lyme as a possible reason for her illness and sent her blood to a laboratory that interprets results more liberally than what the US Centers for Disease Control and Prevention recommends. The results were not definitive but it suggested Andrea maybe did have Lyme. She started a course of antibiotics in May 2011 and suddenly, got better. She danced at a party.

Yet after four or five months, she regressed. Andrea got sicker and thinner. She couldn’t sleep. She made a decision to go on intravenous antibiotics, but it did not seem to help at all. In April 2012, sick, bedridden, out of her mind with insomnia and depressed, she took her life.

I don’t know if Andrea had Lyme – several tests indicated no, one test indicated yes. All I know for certain was that she was so, so sick.

At a celebration of her life, hundred and hundreds of people came. Lyme was a constant refrain. Everyone, it seemed, had a story about it – those who found a tick, took antibiotics and got better. But there were other stories, those like Andrea’s, where people didn’t get better. Some were sure they had Lyme. Others weren’t sure what they had. Calls were made to get to the bottom of these illnesses.

This series is my attempt to do so.

Beth Daley can be reached at Follow her @Globebethdaley.

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