A Northville woman recalls her painful 5 1/2- year struggle as experts suggest the state has cause for concern
May 31, 2005
BY BILL DOW
FREE PRESS SPECIAL WRITER
Working late one night in 1998 at a printing company in Clawson, Donna Berkopec-Kosmowski felt something bite the back of her right thigh.
As she slapped at her leg, the Northville resident had no idea she was beginning a dreadful medical journey that would include multiple debilitating physical problems and misdiagnosis by several doctors in four health care systems.
Within two days, she developed a bull's-eye ring at the bite spot, but was told by a several acquaintances that it probably was just a spider bite. She remembered coworkers saying that large spiders had been seen on the wooden shipping skids at work.
The ring eventually disappeared, but two months later, she began losing weight and experiencing periodic bouts of fever and chills. One day, Kosmowski was rushed by ambulance from work after complaining of heart palpitations and dizziness.
The explanation for her condition was stress from her sales marketing job, something she would hear repeatedly from doctors as her medical file ballooned. Meanwhile, she experienced periodic episodes of severe chest pain, extra and skipped heartbeats, joint pain, sinusitis, severe headaches, fatigue, neck cracking, tingling sensations in her head, eye problems and menstrual irregularity. Doctors determined that her heart had no blockage and that spots found on her brain, once thought to be possible tumors, were unexplainable. It was finally suggested that she might be depressed.
Kosmowski eventually stopped working while she and her husband, Kurt, along with sons Matthew and Aaron, tried to cope with an illness that had upended their family life.
In addition to the financial hardship of out-of-pocket medical expenses and the loss of income that has amounted to "thousands and thousands of dollars," Kosmowski was no longer able to volunteer at her children's schools or attend as many of their activities. The enjoyment of exercise, long walks and family trips were put on hold, while worrisome stress became nearly overwhelming for everyone.
Finally, a chance meeting with a medical researcher while waiting in a doctor's office in March 2004 lead to a correct diagnosis.
"When I told her my symptoms, she asked if I ever had been bitten," says Kosmowski, 42, who now calls the stranger her guardian angel. "She gave me a book on Lyme disease and referred me to the Michigan Lyme Disease Association."
'A twofold nightmare'
One year ago this month, 5 1/2 years after Kosmowski received her bite, Dr. Arnold Markowitz, a Keego Harbor internist specializing in infectious diseases, confirmed through a series of tests that Kosmowski had Lyme disease. The illness is caused by the bite of a deer tick and was identified in Lyme, Conn., in the late 1970s.
According to Markowitz, early detection and antibiotic treatment within the first year of being bitten greatly reduce the potential for relapse. "With later-stage Lyme disease, however, a patient can develop a chronic disease with neurological, cardiovascular and rheumatological complications," he says.
"My prolonged medical excursion was a twofold nightmare," says Kosmowski, whose symptoms have improved since recently completing nine months of intravenous antibiotic drips that took up to six hours every day. "I was not being believed or listened to by several doctors, and I was misdiagnosed for a few years while this disease raged inside me. I can't choose which was worse," she says.
According to Tom Forschner, the executive director of the Lyme Disease Foundation, a national organization based in Connecticut, "an early 1990s study by our group and the National Society of Actuaries found that the average Lyme disease patient sees seven doctors and it takes 22 months before they were properly diagnosed."
Linda Lobes, the president of the Michigan Lyme Disease Association says misdiagnosis is not uncommon.
"Unfortunately, Lyme disease symptoms are often mistaken for multiple sclerosis, Bell's palsy, chronic fatigue syndrome and fibromyalgia," says Lobes, who was misdiagnosed with MS for three years before she learned that she had contracted Lyme disease after a 1989 tick bite in Traverse City. "The testing is poor, there's a lack of understanding of it by the medical community and the public, and it's underreported in Michigan," she says.
"What's especially troubling was that I had mentioned my bite to a doctor early on and had been tested for Lyme, but it turned out to be a false negative, which I have since learned can happen," says Kosmowski, who also recalls one doctor saying there was no Lyme disease in Michigan.
27 cases in '04
According to Dr. Kim Signs, a zoonotic disease epidemiologist with the Michigan Department of Community Health, researchers at Michigan State University have documented evidence of the Lyme disease-carrying tick in Menominee County in the Upper Peninsula and in the Lower Peninsula western counties of Van Buren, Allegan, Berrien, Ottawa, and Muskegon.
For 2004, Signs says there were 27 confirmed Lyme disease cases in Michigan based on criteria set forth by the Centers for Disease Control and Prevention in Atlanta. Two were in Oakland County, and one was in Wayne County, "although it does not necessarily reflect where the residents were exposed," she says.
"Our current surveillance effort is concentrated in southwestern Michigan, but we certainly are interested in hearing from anyone who believes they have contracted the disease in other parts of the state," she says. "By law, physicians are required to notify their local health department of any cases of Lyme disease that they diagnose.
State efforts to fight Lyme disease are not a line budget item, according to Signs. In addition to surveillance efforts, the Department of Public Health provides information on the disease through its Web site, newsletters and an informative poster. Department officials also are available to answer questions from the medical community and the general public.
"However, 20 years of statewide surveillance data indicates that for most of the state, the risk of contracting Lyme disease is low," says Signs.
Not everyone agrees.
"The state doesn't feel we have a Lyme disease problem and only refers to the UP and a few west Michigan counties, but based on our own patient surveys, two of our biggest counties are Oakland and Saginaw," says Lobes.
Oakland County Executive Brooks Patterson, whose daughter Mary contracted Lyme disease as a senior in high school, would welcome comprehensive surveillance for Lyme-infested deer ticks in his county.
"Unfortunately, there's still a lot of doubting Thomases out there who don't think Lyme disease exists in Michigan," says Patterson. "We need to recognize it's here, put out the word that early detection is the best defense, and that you can treat it. The bottom line is that Lyme is a threat, and we should treat it as such."
Markowitz, who treated Patterson's daughter, expresses concern with the perception of Lyme disease and the ramifications it has for diagnosing victims.
"It's absolutely more prevalent than what people are led to believe," says Markowitz, who thinks it is difficult to obtain an accurate incidents figure. "Where there's deer, especially in heavily wooded areas, there's Lyme. Part of the problem in underreporting is that my Lyme patients don't always meet the CDC criteria the state uses for epidemiological purposes, although they meet it for clinical purposes."
The CDC criteria used by Michigan require that the patient exhibit a characteristic bulls-eye rash and also test positive on two tests used to detect the Bb antibodies: the enzyme-linked immunosorbent assay test (ELISA) and the Western blot test.
"The problem is that only 20% of Lyme patients exhibit the bull's-eye rash and the testing is poor," says Markowitz, who estimates he diagnoses between 60 and 100 new cases of Lyme disease each year from in-state and out-of-state residents.
"Many people are treated for Lyme disease that don't fit CDC criteria, and some doctors don't attempt to diagnose it and instead just put their patients on antibiotics. If you stick with the strict CDC criteria, you don't have as many cases reported than you would with more clinical information and a more liberal interpretation. I think the state needs to be more realistic about why we don't have as much Lyme disease as the states surrounding us," says Markowitz. "When doctors are told there's not a Lyme disease problem in Michigan they don't look for it in their patients. And if you don't test for it, you're sure not going to find it."
An information advocate
Today, Kosmowski is feeling better ("with more good days then bad") and is more optimistic. She now takes 2,000 milligrams of antibiotics daily and finds strength in her faith in God, which includes weekly prayer visits to Our Lady of Victory Catholic Church in Northville and a monthly healing service at a Detroit-area Catholic church.
She may have also found a new mission in life.
"It's not necessary in 2005, with all these fantastic health systems, to not properly diagnose Lyme disease," says Kosmowski, who wants to become an advocate for educating the public and the medical community about Lyme disease.
"There needs to be better research and testing, and a greater interest from the state in combating this disease. I want to help prevent other people and their families from going through what I have," Kosmowski says.
# Symptoms, diagnosis and treatment
HOW PETS ARE AFFECTED
Lyme disease has been diagnosed in dogs, cats, horses, goats, sheep and cattle.
Dogs infected with Lyme disease may display symptoms that include fever, loss of appetite, depression, lethargy, joint pain, kidney disease, heart disease and nervous system disorders.
Most cats do not exhibit symptoms of Lyme disease; however, symptoms in cats can be similar to those of dogs and may also include eye problems and breathing disorders.
Consult your veterinarian to determine your pet's risk level and for recommendations on tick prevention.
? Centers for Disease Control and Prevention (CDC) Lyme Disease Web site: www.cdc.gov (search: lyme disease)
? State of Michigan Emerging Diseases Web site: www.michigan.gov/ emergingdiseases
? Michigan Department of Community Health
? Michigan Lyme Disease Association
? Michigan Lyme Disease Association support groups: Western Wayne County, 734-326-3502
North Oakland County, 248-625-8747
Oakland/Macomb/St. Clair, 888-784-5963
? Lyme Disease Association
www.Lyme Disease Association.org
? The Lyme Disease Foundation
? American Lyme Disease Foundation Inc.