— Part 1 of this 2-part series on Lyme disease focuses on one local woman’s trial with the tick-borne disease, a growing problem particularly across east central Minnesota. Next week, the second installment will address the ongoing controversy over diagnosis and treatment, which has generated interest from state legislators.
By Jon Tatting
ECM Post Review, North Branch
Tina Kabage is living proof that one can have Lyme disease without the classic bull’s eye rash or a positive test result.
After receiving several tick bites in the summer of 2007, the Stanchfield woman had no indication anything was wrong other than what seemed to be the flu, which resolved.
It was August when other symptoms followed, ranging from muscle twitches and aches, nerve pain, nausea, extreme fatigue, sensitivity to light, confusion and insomnia. She blamed her occupations as a waitress and freelance artist, hours of standing at the restaurant and in her home studio for the pains in her legs and feet.
As her symptoms and pain escalated, Kabage was forced to quit her jobs and begin a journey of frustration with doctors who could not figure out her mystery illness, who kept ruling out the disease she knew she had.
Kabage’s story is not a unique one among the growing number of Minnesotans who develop the tick-borne disease, which is considered a high risk for those either living or spending time in mainly the forested areas within the east-central region, including Chisago and Isanti counties, according to the Minnesota Department of Health.
From 1986 to 2008, the MDH Web site says, of the 11,000-plus cases of tick-borne diseases reported in Minnesota, the majority (more than 9,700 cases) were Lyme disease. And while 1,050 confirmed cases were reported in 2008, a record number of 1,239 was confirmed in 2007 with near-record numbers of Lyme disease cases reported in 2004 (1,023 cases), 2005 (917 cases) and 2006 (913 cases).
Since the 1990s, MDH indicates, the number of Lyme disease cases has been swelling dramatically due to a variety of factors, including increasing physician awareness, increasing infection rates in ticks and expanding tick distribution.
Still no answers
Kabage grew up in Columbus Township, near Forest Lake, and graduated with the class of 1989 at Forest Lake High School.
For the past 10 years, she and husband Derek have been living at their Stanchfield home where art and the outdoors have always been important to Kabage, who especially enjoys painting pet portraits, all things gardening and being with her dogs.
By September, 2007, she went to the doctor since the pain in her legs continued despite time spent resting. The doctor ran some basic tests, with follow-up appointments with Kabage.
“I questioned Lyme at that time,” she said. “He responded, ‘Did you have a bull’s eye rash?’”
Though she didn’t have the signature mark, Kabage was tested, but the results came back negative for Lyme. She could only speculate, but the intuition of having the infection would never leave her.
With time, her pains and symptoms escalated. Her left leg began to drag when walking. She couldn’t escape the twitching, numbness and tingling sensations in her muscles and body.
“Something wasn’t right,” recalled Kabage.
Her local family doctor then referred her to a specialist in the Twin Cities where she was evaluated for other conditions, from ALS to multiple sclerosis (MS). She was tossed around from specialist to specialist, neurologist to rheumatologist, but still no answers despite test after test.
By December 2007, Kabage’s condition was not getting any better. Walking was difficult. She had heat intolerance, insomnia, brain fog (not thinking clearly), neurological symptoms and the left side of her face was numb, like it was full of novocaine.
“All along I thought it was Lyme,” said Kabage, who began to research the disease on her own time.
She began making numerous trips to the Mayo Clinic in Rochester, where she saw “the top neurologist in the country,” she was told at the time. “He was called the MS guru.”
“He had no idea what was wrong with me,” Kabage continued. “His diagnosis was Chronic Pain Syndrome. I came all the way to Rochester to hear that. I felt defeated. I told him he was wrong.
“Due to the severity of my symptoms, something was not showing up on the testing,” she added.
So in her final conversation with the “MS guru,” Kabage asked about Lyme when MS was ruled out. His response: “You never had a bull’s eye rash and the Lyme test was negative.”
Kabage was non-functional by 2008. She couldn’t even peel an orange with her crippled hands. The left side of her face was slumped, as if she had Bell’s palsy, with her hearing and vision affected as well. She was having hallucinations. Yet is was the nerve pain that was most debilitating for Kabage.
“I was struggling to survive day to day. I don’t know how I did it,” she said. “As I was passed from doctor to doctor, insisting that something was making me sick, two physicians recommended I have a psychiatric evaluation because I didn’t have Lyme, my test was negative.”
Self advocacy
It was time to take matters into her own hands. With the help of her husband, Kabage began to play self-advocate by researching library books and site after site on the Internet.
Thanks to information and related links found on the Forest Lake-based Minnesota Lyme Action Support Group MLASG (www.mlasg.com) and International Lyme And Associated Diseases Society (www.ilads.org) Web sites, Kabage learned that Lyme disease is an epidemic. And perhaps most telling, not all victims of the tick-borne disease get the bull’s eye rash and testing is not always accurate.
“Doctors want to see that positive test,” said Kabage of the proof many doctors rely on before approving treatment.
Feeling confident, Kabage found a general practitioner to test her again. This time, she ordered a test from an independent lab, IGeneX Reference Labs, which specializes in Lyme testing from its facility in California.
In April 2008, after six Lyme tests and since she first became ill eight months earlier, the test came back positive allowing her to finally be treated.
And she’s gradually getting her life back, with artistry and a part-time job, thanks to the long-term liquid antibiotics via intravenous line (IV) that are pushing her infection into dormancy.
“This disease is nothing to mess with,” said Kabage, who remains challenged with several symptoms. “This IV is literally my lifeline.
“There is a desperate need of bringing Lyme awareness to Minnesota east-central communities,” she added. “Many go undiagnosed for not just months, as myself or to the degree of my illness, but suffer for years of a mystery illness that is actually Lyme.”
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