Lyme Lives Here

Doctors and lawmakers alike take a stand against this misunderstood disease permeating Southeastern Pennsylvania.



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Jayne transmitted Lyme and four of its co-infections to her son. At least, that’s what Dr. Charles Ray Jones thinks. In 2000, the New Haven, Conn., pediatrician diagnosed Jared with gestational Lyme and Lyme encephalopathy exacerbated by a tick bite at age 5. But that’s not what any doctor around here would say.

Over the years, Jared did his physical therapy at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del. He was featured in photos for the facility’s 2003 hospital calendar. Before its publication, the Sheas say the hospital told them that the diagnosis in Jared’s calendar description had been removed because physicians there didn’t believe gestational Lyme existed.

Nemours policy and HIPAA privacy rules prevent the hospital from commenting on individual patients. But, based on the latest evidence-based research, gestational Lyme is an extremely rare diagnosis, says hospital spokesman John Grabusky.

Since Jared’s birth, any diagnosis had always eluded the Sheas, who saw dozens of doctors. A Children’s Hospital of Pennsylvania pediatric neurologist said Jared wouldn’t celebrate his 11th birthday. An infectious diseases specialist at duPont believes “all of Chester County is crazy [when it comes to Lyme],” says Jayne. “Jared was somehow a threat to him. My constant question remains: What are they afraid of?”
 

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