High Point woman fights lengthy battle against Lyme disease
Stephanie Fischer was 8 years old when she was bitten by a tick during a family camping trip in the North Carolina mountains.
The bite seemed innocuous enough at the time, causing a headache and some mild weakness and fatigue. Those symptoms gradually subsided, and as far as Fischer and her parents knew, that was the end of it.
Nearly a quarter-century later, though, the 32-year-old High Point woman says the tick that bit her when she was a girl is still sucking the life out of her.
Fischer, a web developer for a Greensboro company, has spent much of her life battling chronic symptoms of an elusive illness she now knows to be Lyme disease, an infectious disease transmitted through the bite of a tick. Until just a few years ago, most North Carolina health officials didn’t even acknowledge Lyme disease existed in this state, which, as you might imagine, made getting a diagnosis — let alone treatment — extremely difficult.
“The fact that Lyme disease awareness really was not widespread at the time — and, honestly, still isn’t now — was a major factor contributing to my disease not getting caught early,” Fischer says.
A couple of weeks after getting bitten, Fischer experienced severe flu-like symptoms — a common Lyme reaction — but she never developed the telltale bull’s-eye rash exhibited by some Lyme disease sufferers, so she was never tested or treated for the disease.
The tick bite was all but forgotten, even as her symptoms worsened through the years: Depression. Lack of energy. Physical weakness. Cognition and memory problems. Brittle diabetes. In more recent years, the symptoms intensified. One of the worst, Fischer says, is a deep, pulsing sensation in her body — “like a cell phone on vibrate, but slow and constant — a symptom her doctor suggested is probably triggered by inflammation of her central nervous system.
“Now, I have about six pages of symptoms in total,” Fischer says, adding to the list enlarged lymph nodes under her arms, muscle tics, loss of balance, seizures and heart palpitations, just to name a few.
Meanwhile, a lengthy succession of doctors struggled to diagnose her, including one who told her she had multiple sclerosis. Several suggested her illness was “all in her head” and even referred her to a psychiatrist.
It wasn’t until about three years ago, after seeing Lyme disease featured on an episode of the “Mystery Diagnosis” television program, that she began to pursue — and eventually receive — a Lyme diagnosis.
One of the problems, Fischer points out, is that the standard blood tests for Lyme disease are not sensitive enough, so there are a lot of “false negative” results. She says she found an out-of-state Lyme specialist and was tested through a lab that offered more sensitive testing, resulting in her diagnosis.
Then came the issue of receiving treatment — and paying for it.
Standard Lyme treatment calls for a regimen of oral antibiotics, which typically is effective for acute cases of the disease, but “Lyme-literate” doctors — the term given to physicians who specialize in Lyme disease — tend to prescribe strong doses of intravenous antibiotics for chronic cases such as Fischer’s. Also, only a handful of Lyme-literate physicians practice in North Carolina; Fischer, like many other patients in the state, sees Dr. Joseph Jemsek, a nationally known specialist practicing in Washington, D.C.
The problem is that Fischer’s insurance will not cover IV antibiotics — and she can’t afford the costly treatments on her own — so she’s currently not receiving the drugs her doctor says she needs.
She even resorted to creating a page on the Go Fund Me crowd-funding website to try and raise the needed money. The page includes a photo of Fischer from the camping trip during which she was bitten, a detailed history of her illness, and a plea for funding assistance. (You can view her page at www.gofundme.com/lifeFromLyme.)
“This disease majorly, majorly impacts me, especially now,” Fischer says. “I was able to have sort of a normal life when I was a teenager, but now it’s much, much different. There’s no area of my life that’s not impacted, because it’s a multisystem disease and because it affects my brain so badly. I just wish I could get my life back.”
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Lyme in North Carolina
• During 2012, North Carolina reported 127 confirmed and probable cases of Lyme disease among 54 of the state’s 100 counties.
• For the five-year period from 2008 to 2012, the state reported 438 cases from 78 counties.
• Human cases have been diagnosed year-round, with most cases occurring between April and July.
• By the end of 2012, three counties — Guilford, Haywood and Wake — had been classified as endemic for Lyme disease, meaning that two or more cases have been confirmed in each county and the patients’ travel histories indicate that the infection was acquired in that county.
• The N.C. Department of Health and Human Services page about Lyme disease can be viewed at http://epi.publichealth.nc.gov/cd/diseases/lyme.html.
• The Carolina Lyme website can be found at www.carolinalyme.org.
• The website for the Chronic Fatigue, Fibromyalgia and Lyme Disease Support Group of the Triad can be found at www.cfsfms.org.