Most doctors say Lyme Disease is easily identified and treated, but some patients believe they were misdiagnosed for so long it crippled them. For decades there's been no real progress in solving the mystery of Lyme Disease. And now patients who've suffered years of debilitating symptoms are speaking out about what they believe is a lack of understanding and empathy in the medical community.
Lyme Disease is caused when an infected tick jumps onto the skin from grass, leaves or pets. The standard symptoms include a bulls-eye shaped bite mark, fatigue, headaches, joint pain and swollen lymph nodes. Most doctors say you get better in two to six weeks with antibiotics.
But it's easily misdiagnosed, and a growing number of patients say they endured years of symptoms without a doctor even mentioning the possibility of Lyme Disease.
"What's so crazy," says Lauren Egler, "(is that) if doctors are looking for this, people wouldn't get so sick."
Egler believes she was bitten by a tick as a child. Doctors gave her multiple diagnoses, from fibromyalgia to chronic fatigue to lupus and multiple sclerosis. She got married and had four children, and finally test results came back showing not only her Lyme disease, but her children's as well.
"I believe they contracted it during birth." she says.
Now Lauren and three of her children are taking oral antibiotics and vitamins to lessen the symptoms.
Like Lauren, Nancy Mackay says she lived with Lyme Disease symptoms for decades before getting tested for the disease. At its worse, it began to affect her brain.
"I was losing my ability to communicate. Words were going away," said Mackay. "I went to Jewel and couldn't figure out how to get out."
The tests themselves are not accurate, so the best way to get properly diagnosed is to see a doctor who recognizes the other symptoms. But few doctors are experts, and Nancy travels from her Chicago area home to South Carolina to get her perscriptions. She's also learned how to give herself intravenous antibiotics.
Nancy and Lauren both say they have a chronic version of Lyme Disease. But doctors are divided over whether Lyme Disease can last for years at a time. Many say six weeks of treatment should cure. But Nancy and Lauren have had to take antibiotics for months, and still can't shake off their fatigue and other symptoms. They're still a bit worried every time they go outside in the summer.
Now a documentary has come out that presents the arguement for the existence long-lasting Lyme Disease. It's called "Under Our Skin", and is produced by Open Eye Productions. Patient organizations are using it to spread awareness and raise money for new research. In the Chicago area, it's being screened on June 28 at the Music Box Theater.
For more information on both sides of the controversy, visit the Centers for Disease Control, the Infectious Disease Society of America and Turn the Corner the Fight Against Lyme Disease.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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