Jerry Davich: Valpo family warns of Lyme disease uptick

Jerry Davich. | Jeffrey D. Nicholls~Sun-Times Media

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Updated: July 2, 2012 9:37AM

Erin Venice-Fortner is convinced that Lyme disease is escalating in this region, especially in Porter County.

The rural Valparaiso woman has reason to think so because, in part, her 6-year-old daughter, Charlotte, is the youngest documented case in the county, according to her medical provider.

Plus, confirmed human cases of the disease have increased in Indiana over the past five years, according to Indiana Department of Health data. The numbers are not alarming — from 32 to 62 cases (in addition to 16 “probable” cases) from 2005 to 2010 — but alarming enough to prompt a town hall meeting earlier this month.

At that meeting, in Ogden Dunes, more than a dozen people showed up and each had Lyme disease. Another similar meeting will take place at 6 p.m. Wednesday at that town’s fire station.

“This is a very important subject for the community to be discussing,” Venice-Fortner told me in a patient room at the Kouts Family Health Care Clinic.

The small clinic on the town’s north side seems to be the go-to place to test for and treat Lyme disease, with a startling 154 cases from across the region and state, according to Kathy Lynch, a nurse practitioner there.

Not all of those cases are confirmed “CDC positive,” a process that involves contentious criteria depending on which health official you talk to. But Lynch said the increase in the number of cases is attributed to better testing and more awareness of the disease in the medical community. Similar to the numerical explosion of autism cases in the country, I believe.

“Yes, better testing and diagnosis can result in finding more cases in anything,” said Ken Severson, spokesman for the Indiana Department of Health.

He stated the obvious, of course, but Fortner, who has suffered several health problems in her life, is determined to get the word out about Lyme disease.

“I don’t want others to have to suffer, especially other children,” she told me while clutching a stack of medical paperwork.

She had her daughter tested after discovering she herself had “positive bands” for Lyme, though not diagnosed as CDC positive. Treatment on her daughter started soon after.

“Charlotte has to get five IVs per week, and she’s terrified of needles, so it’s torture,” the mom’s husband, Wendell, told me.

Misdiagnosed disease

Lyme disease is an illness that can affect the skin and, in some patients, the nervous system, joints or heart, according to the ISDH. It is caused by a spiral-shaped bacterium called Borrelia burgdorferi, typically spread to humans from animals via tiny deer ticks, which are no bigger than the head of a pin.

To contract the disease, one must be bitten by an infected tick. Humans can be infected with the organism but not everyone develops symptoms.

Fortner’s daughter, Charlotte, was diagnosed a couple months ago after experiencing the disease’s typical flu-like symptoms, though no rash of any kind. Other symptoms included extreme fatigue, pain in her joints, and cognitive impairment and memory loss (such as forgetting how to squeeze shampoo out of a bottle).

Testing is a bit complex, even controversial.

A test called the enzyme-linked immunosorbent assay, or ELISA, is used most often to detect antibodies to B. burgdorferi. Sometimes, however, it can provide false-positive results.

If that test is positive, another one is often given, the Western blot test, to confirm the diagnosis.

Erin Fortner showed me documentation for her daughter’s “CDC positive” diagnosis, while wondering why public health officials aren’t warning residents about the disease.

“Why would the health department want to keep this a secret?” she asked. “Why are all the politicians so nervous to approach this subject?”

I don’t know about such a conspiracy, of sorts, and I don’t want this column to be misconstrued as a Chicken Little “sky is falling” cry of epidemic proportions. But if Fortner’s case helps another ailing person to get properly diagnosed, I’d be content.

Severson, the spokesman for the Indiana Department of Health, pointed out that our state is not even in the top 10 with the most cases of Lyme disease. Some states had more than 3,000 confirmed cases in 2010. Illinois had 135 that year, and 2011 data is still being processed.

In the meantime, 6-year-old Charlotte has undergone her intravenous antibiotic treatment and is now on oral medication to quell the disease. She’s also back at school and seemingly back toward a normal, healthy life.

The Fortners’ primary concern is for doctors to be more aware of this disease, and for patients to be tested for it if needed. Lyme disease can mimic several other chronic illnesses, including lupus and fibromyalgia, and it’s too often misdiagnosed.

The couple suggests watching a documentary titled “Under Our Skin,” which can be viewed on Netflix and YouTube.

They also suggest that patients — and doctors — visit the website of the International Lyme and Associated Diseases Society — www.ilads.org — to learn more about the disease and its intriguing statistics. For instance, less than half of the people with Lyme disease can recall being bitten by a tick. Also, feel free to contact me and I’ll connect you with the couple or with Lynch, if needed.

“Before all this, I didn’t know a thing about Lyme disease,” Venice-Fortner said. “I never in a million years would have thought my daughter had it.”

Losing ‘the Bretster’

Bret Laczynski, the 19-year-old Valparaiso resident who I’ve written about several times since 2004, has died.

If you recall, Bret suffered through two brain tumors in his young life, but he touched so many people along the way.

Earlier this year, I attended a special standing-room-only graduation ceremony for him at the Special Education Learning Facility in Valparaiso.

On Friday, his father, Todd, told me Bret died in the early hours that day.

“It was very peaceful,” he said.A visitation for Bret will take place from 3 to 8 p.m. Monday at Valparaiso Nazarene Church; his funeral will be there at 11 a.m. Tuesday. Burial will be at the city’s Angelcrest Cemetery.

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