LymeBlog - North Iowa native, Story City woman advocate for Lyme disease victims

North Iowa native, Story City woman advocate for Lyme disease victims
Globe Gazette, Mason City, IA
By KRISTIN BUEHNER, kristin.buehner@globegazette.com

Both Tracie Schissel, a native of Burt now living in Brainerd, Minn., and Judith Weeg, of Story City, are advocates for Lyme disease patients in Iowa and Minnesota — and both have both been diagnosed with the disease.

Schissel and her sister, Leslie Wermers, of Bloomington, Minn., have established a Lyme disease advocacy group, lymefighters.org, a non-profit organization with a Web site.

Their father, Bill Wermers of Burt, also has been infected. All three were infected in the Brainerd area, Tracie said.

They believe the disease is “grossly under-reported.”

Leslie, who developed a bulls-eye rash, is just beginning treatment.

Tracie was bitten by an infected tick in about 1990 and again in 2005. She did not develop the tell-tale bulls-eye rash either time.

She felt the second tick bite, which was painful, and developed a rash all over her torso, knee and foot as a result.

“It’s the most misdiagnosed, most misunderstood, most mistreated disease on the planet,” said Schissel, 41. “The fatigue is so debilitating.”

Leslie, who is 40, has multiple brain lesions as well as lesions on the spine, liver and lungs. “The pain is dreadful,” said Tracie. “She is very, very sick.”

Within a month and a half of being bitten, Leslie could not get out of bed. She suffers from arthritic and muscle pain.

Tracie’s symptoms have included short-term memory loss, body tremors, ringing in her ears, light sensitivity, vertigo, shooting pains in her back and neck, swollen glands, sore throat, pain on the soles of her feet, muscle pain and muscle weakness, facial twitches, tingling and numbness in the face and tongue and alternating chills and hot flashes.

She has lost 25 pounds, even though she eats well, she said. “I’m wasting away.”

Because she worked in a hospital, where she was exposed to infection, her physician recommended that Tracie quit her job.

Weeg, co-founder in 2004 of the Lyme Disease Association of Iowa headquartered in Story City, contracted Lyme disease 12 years ago while living in Philadelphia.

She went from being a person who jogged two miles a day and swam every day to a person in a wheelchair. “It took six years for me to relearn how to read and write because of the brain damage.”

The disease progressed because it took so long to ...

diagnose it, she said.

“It’s a horrific nightmare,” she said. “This is a disease that can kill you. People need to wake up. Ticks are no longer harmless.”

“This is an Iowa problem,” she said. “I don’t want to be alarmist. I just want people to be cautious.”

She helped found the Lyme Disease Association after a friend died of Lyme disease at the age of 32. “She died a horrid death. She died unnecessarily.”

The first cases of Lyme disease were reported to the state in 1990. The number that year was 16. The highest number of cases were reported in 2005 and 2006 — 91 and 97 cases, respectively.

No cases of Lyme disease have been reported to the Cerro Gordo County Department of Public Health this year, a department spokeswoman said.

In the past 10 years, only two cases have been reported in Cerro Gordo County.

Dr. Anne Sullivan, a family practice physician at University Hospitals in Iowa City, said there is no mandatory reporting for Lyme disease.

“In the early stages, your blood test may not be positive, even though you have Lyme disease,” she said.

The physician will treat you, however, to prevent it from developing into the more severe late stages.

“Whenever we see disease, it’s always the tip of the iceberg,” Sullivan said. “It’s more common than it was.”

Lyme disease is usually carried by ticks in the nymph stage, when they will not be visible, she said.

If untreated, symptoms such as fatigue, flu-like illness and/or overwhelming joint, muscle aches, neurological and cardiac problems can develop.

The disease is harder to treat successfully the longer you wait to begin treatment, Sullivan said. It has a cyclical remission.

Lyme disease facts:

Lyme disease is an infectious, non-contagious, bacterial infection transmitted by the bite of an infected tick. It may affect the skin, nervous system, heart and joints.

Several kinds of ticks in Iowa can transmit Lyme disease: deer tick, Lone Star tick, and dog (or wood) tick. In Iowa, the deer tick is the most common carrier.

If not diagnosed early, if left untreated or if not treated adequately, it may develop into debilitating arthritic, cardiac, neurological, digestive or psychiatric conditions. It can cause long-term disability or can even be fatal.

There are 100 strains of Lyme disease in the United States alone. An estimated 250,000 people are infected annually with Lyme disease in the United States.

Dealing with ticks:

Ticks should be removed immediately with tweezers. Do not burn them off. Grasp the tick close to the skin. Pull the tick straight out. Apply antiseptic. Disinfect tweezers. Wash hands thoroughly.

Call your physician immediately if you experience symptoms for possible diagnosis, testing and treatment.

Send the tick in:

If the tick that bit you is available, it may be sent for testing. Place tick in plastic bag with a tissue and one to two drops of water. Seal it and place in an envelope with your name, address and phone number.

Mail to: Iowa State University, Department of Entomology, 440 Science II, Ames, IA 50011-3240.

Preventive measures:

Remove leaf litter and brush from around your home, Prune low-lying bushes to let in more sunlight and mow lawns regularly. Keep woodpiles in sunny areas off the ground and clean up the ground around bird feeders.

Wear long-sleeved shirts and long, light-colored pants tucked into socks or boots, stay on trails when walking or hiking and avoid high grass.

Use products containing DEET to protect exposed skin. Use products containing Permethrin on clothing.