Instead of packing their children into SUVs and heading for a field, they take long drives upstate to watch their sons or daughters receive intravenous drug treatments, attend meetings with teachers, organize informational forums and work with state and local health officials in an effort to make sure the experiences they have had are not repeated.

Some do this while they are ill themselves.”What’s brought most of us here is we are mothers with children who are affected, and we can’t watch the suffering anymore,” said Siciliano, co-president of the group.

Along with Siciliano, every woman involved either has been infected or affected by Lyme disease. Their stories include accounts of children afflicted with fatigue, depression, joint aches, memory loss and blurred vision – common symptoms of Lyme disease.

via Mothers fight Lyme disease,

But the blood tests for the disease are no more than 40 percent accurate, health officials have said.

She was a history teacher at South Kingstown High School and was on a teaching retreat on Nantucket when a tick bit her in 1993. A colleague noticed the telltale red bull’s eye rash on Coen’s neck as they drove home.

Coen saw a doctor who prescribed an oral antibiotic. She was fine for a year or two, but then began the chronic sinus infections, migraine headaches, night sweats and muscle spasms.”

What it actually was was the Lyme disease, and she’d have swelling and muscle spasms in the sinus region,” Yarrow said.

One spasm was so severe it broke Coen’s jaw, her father said. Other spasms wracked her body so violently that her ribs were twisted out of alignment, Yarrow said.

via LymeBlog – BETH’S QUEST: Family crusades against Lyme disease.