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A time for Lyme
John Quinlan, Journal staff writerMonday, April 17, 2006
Spring bites.
It is a season that most of us embrace. The birds are singing. The flowers are blooming. The snow is most likely just a memory.
But spring also welcomes the return of the mosquito and the tick. And those nasty bites.For Teresa Wolff, an endless winter would be welcome if it would eliminate that tick bite that changed her life forever, making it at times feel like hell on earth. It cost her her health and her daughter's health. It also cost her a tick load of money as she tried for years to convince doctors and friends that yes, she really was sick, not crazy. Nobody -- but nobody -- would believe that she had Lyme disease. That was strictly an East Coast disease at the time. It couldn't happen in Iowa!
But it did. And she had it.
She clearly remembers that October day in 1988 when her life changed.
Teresa was a student at Briar Cliff University on a class outing.
"I was a mass communications student, and I was going to do my television interview for a television class, and I wore a skirt so that I would look nice on camera," she said. "Then for my environmental ecology class, we went out to Brown's Lake and collected grass samples out at the lake. It was October. It was a nice Indian summer. It wasn't cold yet. So I tied my skirt up on the side so I wouldn't get it wet in the grass and walked through the grass with sandals on.
"And when I was done, I was just covered from head to toe in chigger bites. But I had one on the back of my right knee that had a very round, large, circular bull's-eye rash on it that I just assumed at the time was a chigger bite. I scratched too much and made it infected. Even some nurses that had looked at it at a local hospital said, 'Put some Cortaid on it. You've got it infected.'
"Who knew then? We didn't know. It's nobody's fault. It's just bad timing."
Seven years, one healthy body and thousands of lost dollars later, that bull's-eye-shaped bite was officially recognized as a disease-carrying tick bite and her condition diagnosed as that of a Lyme disease sufferer.
Ailing overall from flu-like symptoms, Wolff first thought she had strep throat. She was given a mild antibiotic. But over an extended period of time, after many doctor visits and diagnoses, she just kept getting sicker.
In May of the following year, Lyme disease broke into the national consciousness, featured on the cover of Newsweek magazine. A family member noted that the bull's-eye rash mentioned in Newsweek, common to most Lyme sufferers, was identical to the one Teresa had the previous fall.
"They brought me the article and said, 'This is exactly what you have. Look. There's the rash.'" she said.
Not in Iowa!
Unfortunately, doctors still wouldn't believe her. They said there was no Lyme disease in Iowa.
"When you have to fight with a doctor, it's worse than fighting with a lawyer," she said, stressing the need for people to be an advocate for their own medical care.
Lyme disease was first recognized as a clinical illness in the U.S. in 1975 when 51 residents of Old Lyme, Lyme and East Haddam, Connecticut were diagnosed as having a unique form of arthritis. It eventually emerged as one of the most significant threats to public health in the northeastern United States. Just not in the Midwest. Yet.
So Wolff went through years of diagnoses, "as women often do," that indicated it was all a mental condition, she said. She was put on antidepressants and underwent therapy for her purported mental problems until one counselor came to a conclusion that probably saved her life.
"She made a call and said, 'You know, she may be a little off personality-wise, but she actually appears to be ill. So you might want to look into it,'" Wolff recounted, chuckling a bit at the counselor's description.
By this time, Wolff was convinced she had Alzheimer's disease because she was barely functional -- and incredibly cranky.
"I had the brain fog and encephalopathy condition that Lyme's causes, and I constantly would tell doctors, 'I'm sure I'm getting Alzheimer's.' And they would assure me I was far too young for this," she said.
A local neurologist finally agreed to do a brain test just to prove that she was wrong. And to his surprise, the test showed that she did have a somewhat diminished capacity.
"Fortunately for me, a doctor at Mercy Medical Center saved my life by making a phone call to a doctor in New York who looked at my records and diagnosed it. When they sent the blood tests in, it came back positive," she said.
Help at last
It only took seven years to get this diagnosis and begin treatment.
Doctors put a Groshong shunt in her chest and she was treated with IV antibiotics for six months, then again for another six months, and she has been on and off antibiotics on a regular basis since then.
"I can't really say how close I was to dying," Wolff said. "How close was I to killing myself because I was so sick? Every day I had to tell myself, if I just hang on, there's a doctor out there that's going to help me."
Had the disease been promptly diagnosed, she could have been treated immediately with antibiotics and not experienced the more serious problems of late-stage Lyme disease sufferers. With early treatment, which is more likely these days because doctors are more familiar with the disease, recovery can be 100 percent.
"Most of the people who have it long range are people who weren't treated in the early '80s, late '80s and early '90s," she said. "And there also are people who have had it for a long, long, long time and are still undiagnosed."
One problem with diagnosis is that Lyme disease is an imitator disease, she noted. Its development depends on the person affected. Among the diseases mimicked by this great imitator are multiple sclerosis, Parkinson disease, ALS, chronic fatigue syndrome, fibromyalgia and rheumatoid arthritis.
"A lot of people that get it have very different symptoms because it depends on what the weaknesses in your own natural genetic makeup are as to the kind of things it impacts," she said.
Symptoms include fever, malaise, fatigue, headache, muscle and joint aches.
"It takes a perfectly intelligent and capable person and actually can destroy your brain," she said. "To be completely nonfunctional to the point where ... at times people were sure that I must be using drugs or something,"
Wolff said she would space off while driving her car and forget where she was going. She couldn't keep dates straight or follow conversations. Just staying awake as a Lyme disease sufferer is tough because of a reduced energy level.
A fighter, Wolff did manage to keep working, however. With the medical bills pouring in, she had no choice.
"This disease bankrupted me. It cost me everything," she said. "I owe everybody."
Wolff said her share of the medical debt came to $55,000 -- this with insurance covering 90 percent of the tab.
That helped push her into political activism through membership in Iowa's Lyme Disease Association -- its main push being for health insurance, reasonable medical and prescription drug costs, and simple recognition that Lyme Disease exists in Iowa.
According to the Centers for Disease Control and Prevention, new reported cases of Lyme disease in Iowa jumped from eight in 1993 to 58 in 2003, a total of 289 in that period. The Iowa Department of Public Health reported 49 cases in 2004 -- and 57, as of Sept. 16, in 2005. Neighboring Minnesota became one of the most infected states in the country outside of the Northeast, with its animal-borne ticks unlikely to stop at the Iowa border.
Over the years, Wolff worked for the Red Cross and some local radio stations, Today, she works as executive director for Siouxland Habitat for Humanity.
Last month, the community activist was elected chairwoman of the Woodbury County Democratic Party. Raised in Wichita, Kansas, she moved to Sioux City in 1981 following a divorce. She is the mother of three children, including a teen, still at home.
Ticks and termites?
Wolff still has problems at work when it comes to tracking numbers.
Most people suffering from Lyme disease also have some form of arthritis, systemic problems with pain that gravitates.
"One day your leg may hurt. The next day your arm hurts. The next day your neck hurts," she said. "I went through a period of time when I was working when my left arm just ceased to function. I couldn't use it. It was more than just four months that it just hung there by the side of my body.
"I felt kind of silly because because people were like, well, there's nothing wrong with it, except it wouldn't work. No reason, except, you know, the little bugs were being entertained!"
Then one day she woke up and that problem was gone.
She likens it to having a termite infestation in your body. When they're done with one part of the body, they move on to another.
After seven years of serious nontreatment, the disease moved into the chronic stage for Teresa Wolff.
Though medical experts are still debating whether there is such as thing as chronic Lyme disease, she said she knows it's real.
"I've watched people die with it," she said. "It's a very difficult disease and very humiliating and humbling. It affects a lot of different organs of your body, and it just keeps you in chronic pain. And it's hard to explain to people that you're not an anti-social person or you don't have a mental problem."
Merciful result
Lyme disease can affect anyone. Former Congressman Berkley Bedell of Spirit Lake, Iowa, may be the best-known Iowa sufferer. Recently diagnosed was singer Daryl Hall of Hall and Oates. "Sopranos" actress Jamie-Lynn Sigler was paralyzed from the waist down with the disease for several days.
Tragically, in Wolff's case, since she was pregnant at the time of that tick bite back in 1988, the disease was passed on to her daughter, Merci, who was born with Lyme disease.
"She's 16. She dances in dance squad. She works very hard, but she has times when it's really hard for her," Wolff said.
Fortunately, her daughter is progressing a lot better than many other children born under similar circumstances. And is healthier than her mother.
Lord have Merci?
That's what Wolff thought, and thus begat the naming of her daughter because of all the problems an ailing Wolff was experiencing with her high-risk pregnancy. "We were very grateful that she got here," she said. Amen.Courtesy: Sioux City Journal.com
Diagnosis of Lyme disease often can be elusive
Colleen Rogers, Staff Writer5/12/2001
A total of 34 cases of Lyme disease were reported in Iowa in 2000, according to Iowa Department of Public Health. Dr. Joseph Brewer, an infectious diseases physician in Missouri who treats Barker and Weeg, said diagnosis can be very difficult.
The department counts cases of Lyme disease with "the presence of an erythma migrans rash" (also known as a bull's eye or target rash) and "at least one manifestation of musculoskeletal, neurologic or cardiovascular disease with laboratory confirmation."
Neither Melanie Barker of Ames or Judy Weeg of Roland are counted in the state's Lyme disease statistics because they did not meet the criteria. Lyme disease testing is not all-inclusive and there are several strains that may not respond to the classic test.
Dr. Joseph Brewer, an infectious diseases physician in Missouri who treats Barker and Weeg, said diagnosis can be very difficult.
"The symptoms are non-specific and can mimic many other diseases," Brewer said. "The blood tests can have both false positives and false negatives. Physicians should not rely entirely on the blood test to make or exclude the diagnosis."
In the central and southern part of the United States the blood test may even be less accurate since patients may suffer a different strain of the Lyme bacteria, Brewer said.
"The rash after the tick bite is very important if it does occur, but it occurs in only 50 percent of cases," Brewer said. "The Centers for Disease Control and state health department criteria for identifying a case of Lyme are very narrow and limited. Thus, without question, Lyme is under-reported."
Brewer estimated he has seen at least 20 Lyme disease patients from Iowa.
Dr. Greg McDonald, an associate professor in the Department of Moleculary Microbiology and Immunology in the School of Medicine and in the Entomology Department in the School of Agriculture at the University of Missouri at Columbia, has researched an atypical Lyme disease-like illness known as either Masters' disease or STARI (Southern Tick Associated Rash Illness). Clinically, this disease is identical to Lyme disease.
In experiments on erythema migrans skin biopsies and blood taken from patients with Lyme disease-like illness, McDonald's research has proven the presence of Borrelia bacteria that are related to but different from Borrelia burgdorferi, the bacteria associated with Lyme disease.
McDonald has developed a polymerase chain reaction test for Lyme-disease like illnesses detects DNA from the organism in clinical samples instead of antibodies.
The classic antibody tests can be inaccurate, and this has been a major problem for people with Lyme-disease like illnesses that test antibody-negative, so patients go without treatment, he said.
Diagnosis and treatment are further complicated by the fact that "Most people in the U.S., including physicians, think that Lyme disease or related illnesses are only carried by deer ticks" McDonald said. "But the Lyme disease-like illness is associated with Lone Star ticks and dog ticks."
Brewer agreed the potential for several different tick species to carry Lyme is very real and probably much more of an issue than originally thought.
"Here in the Midwest and southern U.S., the Lone Star tick may be very important," Brewer said.
Courtesy: Mid-Iowa News
© 2006 The National Lyme Disease Memorial Park Project
