Their stories are separate and distinct, with disturbingly similar details. They have gone through a series of misdiagnoses, experienced extended periods of debilitating pain, and have been the victims of doubt from strangers and loved ones. They are people with chronic Lyme disease, a bacterial infection transmitted through the bite of a tick."For 21 years, I was on a search for answers to my failing health," said 47-year-old Victoria Shover of Solon, who was diagnosed with Lyme borreliosis one year ago. "Now, I'm in the process of getting my life back."
Shover recalls her 1983 family vacation in Minnesota, during which she noticed an insect bite on the top of her foot. Within hours, her foot was swollen to twice its size and began to display a bull's eye-like rash that eventually streaked up toward her knee. "I didn't know at that time that it was a classic sign of a bite from an infected tick, but within one month of that bite, life as I knew it was gone," Shover said. Three months later, she was diagnosed with "psychiatric mood swings."
It was the first of dozens of diagnoses from over 150 doctors and specialists throughout the nation, including the renowned Mayo Clinic. Allergy tests, rheumatology exams, sleep studies, X-rays, blood tests and even various psychiatric evaluations resulted in a myriad of conclusions. "I tested positive for Epstein Barr syndrome, blood clots, insomnia, depression, anxiety, fibromyalgia, lupus, and Chronic Fatigue," she remarked. "Typically, I felt (the doctors) had misdiagnosed, but other times I felt they were on to something."
It was during a stint of being treated for lupus that Shover says she felt most hopeful. Lupus patients are sometimes prescribed medication used in the treatment of malaria, Shover said, another blood-borne infection caused by a parasite. Because ticks can inject parasites such as babesia, which affect human blood cells, the drugs used to treat lupus and malaria are often prescribed for Lyme disease patients as well. "It was the most normal I felt. The Plaquenil didn't eliminate symptoms, but made life more bearable." However, when Shover's rheumatologist left town, her general practitioner recommended she quit taking the anti-malarial drug, and her health quickly plummeted.
"I lost 90 pounds in five months. I couldn't eat, I had severe internal pain, and vomited suddenly and violently every day," Shover recalled. An inflamed gall bladder was blamed for her illness, and was removed. Still, Shover found herself riding a symptomatic roller coaster, experiencing days filled with fatigue, joint pain, headaches and decreasing cognitive and motor abilities.
Eight months of periodic visits to the Mayo Clinic in Rochester, Minn. turned up vague responses to Shover's multiple examinations; perhaps it was emphysema, sleep deprivation, or anemia, the physicians ventured. They told Vicki she was a candidate for lung reduction surgery because she had pulmonary dysfunction, but later they retracted the diagnosis when further tests showed improvement in her lungs. Mayo's nerve conduction clinic found abnormalities in nerve function, but no determinations could be made. More than once, the inconclusive tests results were recorded in Shover's medical records as "technical mechanical malfunctions" of the diagnostic equipment.
"One neurologist told me I couldn't possibly be having all of the symptoms I `claimed' to be having," she noted. "I couldn't believe my ears. I had Parkinson's-like symptoms, I couldn't walk and I was increasingly disoriented. I felt like I was dying. I even considered suicide." In the end, Shover was subjected to psychiatric testing that concluded hers was a somatization disorder, in effect, this chronic, debilitating illness was all in her head.
"Mayo was frustrated. They couldn't come up with a definite diagnosis because my test results didn't fit into neat categories. In 2000, I had taken an IQ test, which put me in the normal-to-bright range of intelligence. When Mayo did their psychiatric testing, my IQ went down to the 9th percentile. My cognitive abilities were so impaired, I once got lost in Solon, where I had lived for so many years."
Shover said she tried to resign herself to Mayo's final diagnosis. "I tried to believe them, but eventually I had my IQ re-tested and it was back to the 89th percentile. I found out later that (fluctuations in cognitive performance) can be typical of Lyme disease patients."
Shover thus persisted in her fight to find answers and get well. Based on research of her symptoms, as well as the memory of the insect bite on her foot and a nagging intuition that the doctors were missing something, Shover asked more than once to be tested for Lyme disease. "In the beginning, the doctors would say we don't have Lyme disease in Iowa."
Even though cases of Lyme Disease have been documented for over 100 years, it was re-discovered in Old Lyme, Conn. in 1973 where an outbreak of arthritis-like illness afflicted a significant number of people. The preponderance of children with swollen joints, fevers, chills, rashes and slowed heart rates caused physicians to take note. Scientists in the Eastern United States narrowed the illness to a common cause: a bite from Ixodes scapularis, more commonly known as the deer tick.
It was a pituitary specialist in California who finally took note of Vicki's comprehensive medical history and suggested she may have contracted Lyme disease. Finding a doctor who couldn't or wouldn't treat the disease proved to be difficult.
"I contacted a Lyme disease support group, who put me in touch with a doctor in Boone. He confirmed the diagnosis, though he didn't know what treatment to offer someone in late stages of the illness." Vicki's husband Kurt was also found to be infected with the bacteria as well, though symptoms had not progressed as far as Vicki's.
Early stage Lyme disease is treated, and often cured, by administering a series of oral, injected or intravenous antibiotics. Treatment for patients who have suffered for months or years with the infection is more complicated and less hopeful.
"Lyme disease is notorious for ravaging the mind," Shover said. While the illness follows no absolute, predictable route, early signs include flu-like symptoms of fatigue, muscle and joint pain, headache, fever, chills, swollen glands, sore throat and stiff neck. Only about one-third of infected people manifest the classic bull's-eye rash. If left untreated, symptoms can progress to physical and emotional dysfunction, depression, light sensitivity, impairments in vision, seizures, weakened or paralyzed facial muscles known as Bell's palsy, heart palpitations, panic attacks and chronic joint or muscle pain, though this list is far from complete.
Confirming Lyme disease is difficult due to the way the spirochete bacteria attacks organs and tissues in the human body. Often called "the Great Imitator," Lyme disease mirrors symptoms of Multiple Sclerosis, Lupus, Alzheimer's disease, Parkinson's and rheumatoid arthritis. Routine screening tests for Lyme can return both false positive and false negative results. The most reliable screening for Midwestern residents, says Judith Weeg, founder and co-director of the Lyme Disease Association, is the Western blot test.
"In the Midwest, we have a different species of ticks than those out east. Therefore, we have a different species of the Lyme spirochete, namely Borrelia lonestari." Weeg maintains that the Igene X Laboratory in Palo Alto, Calif. is the only lab that tests for the strain. "Using any other reference lab will probably yield a negative result." She does suggest having ticks tested if found on a person. "Being overly cautious, if you have a tick on you, is intelligent," she said.
Recent studies show other types of ticks can carry the Lyme bacteria, including the lone star tick and the American dog tick, or wood tick. Each of these species can be found in wooded areas throughout the United States, including Iowa.
Weeg, an eleven-year victim of Lyme disease, worked for the Center for Disease Control (CDC) and lived in New York state when she was bitten by a tick. Her illness, like Shover's, stumped doctor after doctor in the Iowa City medical community, and progressed to the point where Weeg was bedridden and had lost her abilities to read, play piano and type. "I was on intravenous antibiotics for six years, just to stay alive," Judith recounted. It was this experience, and her long fight to regain health, that moved her to become an advocate for Lyme disease patients.
Weeg founded the Lyme Disease Association to provide educational materials and organize Lyme support groups in Iowa. "Our organization is growing because I continually take calls from every corner of the state," Weeg said. Connecting patients with Lyme-literate doctors is another of her diligent tasks. "There are just a handful of doctors in the U.S. who know how to treat this. I must call 100 doctors every few months to get them interested in taking on Lyme patients. Out of that number, I have had one doctor willing to do that." One doctor, Weeg emphasized, in all the years she's been trying.
The dearth of consistent information on Lyme disease has caused a rift in some medical communities that has become political in nature. Weeg says some physicians simply don't recognize Lyme infection and its symptoms, while others rely on unreliable or incomplete testing, resulting in misdiagnosis. "There is one paragraph on Lyme disease in medical textbooks used to teach students," Weeg contends. "There just isn't enough information available. In order for a doctor to accurately diagnose this, he or she must conduct a Western blot and ask about a patient's complete clinical history."
Shover concurs. "When doctors stop listening to their patients, and rely too much on technology or test results, it can be dangerous. Physicians are only as good as the questions they ask." Fortunately, Vicki advocated for herself long enough to find a doctor who asked the right questions to put her back on the road to health.
Shover began an antibiotic regimen, itself an ordeal for patients who suffer Herxheimer reactions, a temporary but painful heightening of debilitating symptoms. She experienced extreme Herxheimer reactions, but knew it was a necessary step in recovery. "Each day I took the antibiotic was like a layer being peeled back. My mind began to clear and after a month, I threw away my other medications. Little by little, I am getting better." Vicki said Kurt helped her persevere through the early steps of treatment. "He's the most selfless, loyal man, and I feel like the luckiest woman in the world to have him by my side. I really credit him for us coming through this like we did."
At that time, recovery was not the only thing on her mind. "I took a good look at my son, who was seven at the time, and I saw the same manifestations in him."
Shover's son Chanse was diagnosed with Asperger's syndrome, a form of autism, and attention deficit/hyperactivity disorder when he was four-years-old. He suffered from seizures, cyclic vomiting, central sleep apnea and severe growing pains. "He would wake up screaming in pain. He lost 10 pounds in less than a year because he wasn't eating." A comprehensive evaluation at the University of Iowa's child behavior clinic returned a diagnosis of conduct disorder, and Chanse was put on anti-depressants and psychiatric medications to control his seizures.
"Chanse was never able to carry on a real conversation with me or anyone else," Vicki recalled. "He didn't seem aware of his surroundings, didn't make eye contact and he couldn't read social cues or facial expressions. He never opened the door to go outside to play, not once, in his seven years of life. There were so many things he didn't experience as a normal child would." Upon reflection, Vicki remembered a time when Chanse, too, had been bitten by a tick while on vacation in Wisconsin and developed a bull's-eye rash. The incidence was dismissed by Chanse's pediatrician upon returning home to Iowa, and no doctor made note of it in the boy's medical records.
None, that is, until the Shovers met with Dr. Charles Crist in Springfield, Missouri. Crist is a Lyme disease specialist with experience in treating patients in varying stages of the illness. "He said he couldn't promise anything, but he had treated kids like Chanse with success," Shover said.
The first days of Chanse's antibiotic therapy were horrific, Vicki recalled, as he also experienced a reaction to the medication. Within three days, he was calmer and seemed to be feeling better. The fourth day of receiving antibiotics brought an experience to the Shover household that was nothing less than a miracle.
"Chanse was in the tub and he called to me. I knew by his voice that something was different. I sat on the edge of the tub, and he put his hand on my cheek like he was seeing me for the very first time," Vicki whispered tearfully. "He looked into my eyes and said, ``I want you to know you're the best mom in the world. Thank you for taking care of me."
After two months of antibiotic therapy, the Shovers took their son back to the psychiatrist who had diagnosed Chanse with Asperger's. "Chanse made eye contact and interacted with the doctor and played appropriately with the toys, as any other child would. The doctor recommended a re-evaluation to have the autism diagnosis removed from his records." By last November, doctors had weaned Chanse off all other mediations, save his antibiotics. His teachers now report Chanse does well in school, has friends and scores high in social areas.
"I suddenly felt this responsibility to every other mother whose child has been diagnosed with autistic symptoms -- do they have a bacterial infection that no one knows about?" Shover wondered. "Does Lyme disease mimic autism, or are autistic behaviors a symptom of the disease? What if I hadn't followed my mother's instincts to have him tested? What kind of life would he be leading?"
These are questions that may take years to answer, Weeg said, because it often takes years of living, and dying with a disease for the medical community to recognize its impact. "People do die from Lyme disease. Even in Iowa," Weeg remarked. Yet the support groups she organizes are filled with people like Vicki and Chanse, whose health is gradually improving as their symptoms decrease, or even disappear. Recovery is possible, they maintain, with the right combination of awareness and treatment.
Their message is straightforward: prevention is fundamental, recognition of the symptoms and immediate treatment after a bite from an infected tick can mean quick recovery, and seeing a physician with Lyme experience can be the difference between a full life and a life of pain.
Vicki now looks forward to every day. "There are doctors who will read this and say it is bunk. They can call it a miracle or divine intervention, but I can't just be thankful and turn my back," she said. "There is nothing I want more from this experience than to help even one person. I feel like I've been chosen."
P.S. I did get pre-approval from Dr. Crist to include his name in our story.
Failure of existing rules is the prelude to a search for new ones.
--Thomas S. Kuhn, The Structure of Scientific Revolutions
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