I know two friends who have it. It's just one more thing we all need to be aware of every time hit the trails..

State tops nation in Lyme disease cases
2 entire families in midstate suffer from illness
Monday, June 27, 2005
Of The Patriot-News

At the worst stages of Gail Sheffer's Lyme disease, a short trip to the mailbox exhausted her.

"I could not walk to the mailbox without taking a two-hour nap when I walked back to the house," the Wellsville, York County, woman said. "I would be sleeping 12 to 18 hours a night."

Though she is better, she still struggles with her strength and cannot work.

Pennsylvania had more Lyme disease cases than any other state in the latest figures, and the number has been rising.

The state had 5,730 cases in 2003, representing 27 percent of the national total, according to the Centers for Disease Control and Prevention.

The number of cases in the state increased 44 percent from 2002 to 2003, said Emily Cramer, a CDC spokeswoman.

Why the state has become the hot spot "nobody really knows for sure," said Pat Smith, president of the Lyme Disease Association in Jackson, N.J., which has a chapter in Pennsylvania.

"What I have seen is, part of the problem is that Pennsylvania wasn't taking note of the cases that were there. We were getting loads of calls from all over Pennsylvania of people who couldn't get diagnosed for a long time. There's been a big lack of awareness."

Difficult diagnosis:

Increased development, Smith said, has also brought residents closer to animals such as white-footed mice, chipmunks and deer that can pass the Lyme bacterium onto ticks.

The CDC has two criteria to determine Lyme disease: A person must have a "bull's-eye" rash -- a red circular patch at the site of the tick bite -- or a blood test that indicates infection, Smith said.

Many with Lyme disease don't have the telltale rash, and blood tests don't always detect it, Smith said.

Lyme disease is often misdiagnosed because it resembles many other diseases, such as multiple sclerosis, Lou Gehrig's disease and fibromyalgia.

For all these reasons, Smith said she thinks the actual number of cases is far greater than what is reported.

Entire families hit:

Two families -- the Sheffers of Wellsville and the Hengsts of Mechanicsburg -- tell similar tales when it comes to Lyme disease.

Every member of the families has it, yet none recalls being bitten by a tick. Even their golden retrievers have it -- they were the first to catch it.

Gail Sheffer was diagnosed with Lyme disease in March 2004, but doctors told her she might have been living with it for 10 years.

Her shaky health history, marked by allergies, sinus infections, abdominal pain and panic attacks -- all possible symptoms -- led two doctors to that conclusion, she said.

"It may have gotten more severe because I may have been rebitten," she said.

Sheffer's husband, Marcus, 46, was diagnosed in July and her daughters, Megan 17, and Chelsea, 12, in September.

"All four of us never pulled off a tick. We never had a bull's-eye rash," Gail said.

Though she has improved, Gail has never fully regained her strength.

In February, she quit her job of 23 years in human resources for Naval Support Activity, Mechanicsburg. Last week, she was approved for disability benefits.

"I feel like [Lyme disease has] taken away my ability to do the things I used to love," she said. "I was a much, much more active person."

Gail, a co-chairwoman of the York Lyme Disease Support Group, said the disease needs attention.

"It is an epidemic, and doctors are starting to realize their patients may have Lyme disease," she said. "And the thing is, sometimes it takes years to get diagnosed."

Symptoms severe:

Tammy Hengst, 43, had five years of symptoms before being diagnosed with Lyme disease in August.

The rest of the Hengsts were diagnosed soon after -- Tammy's husband, Chris, 44, in February; her son, Aaron, 17, in April; and her daughter, Alyssa, 14, three weeks ago.

Because she has a more severe Lyme case, Tammy has an intravenous line in her left arm to receive an antibiotic.

She has joint and flu symptoms, muscle spasms, vertigo and facial twinges, as well as a walking impairment, which Alyssa teases her about.

"[Alyssa] says I'm dancing like Elvis with my hips and the knees," said Tammy, who sometimes uses a cane and a purple walker, though never in public.

While becoming worse, Tammy had to quit her job as a full-time administrative assistant for lawyers in 2001.

Once-routine activities -- cooking, cleaning and volunteering at church -- are now difficult.

"I can't keep up with it all," she said.

"My concern is that we're not making the progress to treat patients medically," she said. "My concern is that 15 or 20 years from now, it's not going to be any better, and we're all going to suffer for it."

JOHN-MICHAEL STERN: 255-8271 or [email protected]

©2005 The Patriot-News