Photo courtesy of Tina Neathammer.
Rick, Tina and Tori Neathammer man an information booth on Lyme disease.
Tina Neathammer wants people to realize that “Lyme lives here” — in Hoover, Jefferson County, throughout Alabama and beyond.
And Neathammer should know — she and her daughter, Tori, have been living with Lyme disease for years. The experience has impacted their lives to such an extent that the 54-year-old Hoover resident now devotes much of her time to educating the public about the infection and the lack of appropriate diagnosis and treatment availability.
“I had no idea this would become my calling,” Neathammer said. “But there are just so many people out there who are sick but don’t know why and then, when they finally find out, they can’t get treatment.”
In recognition of Lyme Disease Awareness Month, a Lyme disease awareness gathering will be held May 16 from 1 to 4 p.m. at Veterans Park. The event will feature information booths, food and children’s activities. The public is also invited to take part in “take a bite out of Lyme” by biting lime slices. It’s part of an international social media challenge that will be posted to Facebook.
“Frankly, we want to bring attention to ourselves and alert people to this problem that can affect anyone and infects more than 300,000 across the country annually,” Neathammer said. “We have more kinds of ticks in the South than the whole East Coast that can cause Lyme, and it’s important people are educated about the disease, prevention, treatment and patient support.”
Lyme disease is a bacterial infection most commonly contracted from the bite of a tick, though some researchers now believe other creatures such as mosquitoes, fleas and biting flies may also transmit the disease.
According to the Alabama Lyme Disease Association, Lyme can mimic other diseases, and many patients have been misdiagnosed with a variety of conditions including rheumatoid arthritis, multiple sclerosis, fibromyalgia, Parkinson’s, ADHD and mental illness.
Tori became ill in 2006 at age 14, after participating in a Cahaba River cleanup.
“First it appeared to be the flu, then mono, followed by about two years of almost every body part just quitting working,” Neathammer said. “Tori was a dancer, but the exertion wore her out. She was treated for multiple problems including asthma, low blood pressure and fainting, and allergies — but it wasn’t any of them.”
Doctors eventually decided Tori herself was the problem and diagnosed her with anxiety and “school avoidance,” Neathammer said.
“I was so angry about the diagnosis I took her to my family physician, and testing showed she had Lyme disease,” she said. “Meanwhile, I had been diagnosed with rheumatoid arthritis in my 20s but was also getting sick with similar symptoms, so he tested me and I was positive. Now doctors think it was Lyme all along.”
Kevin Wolfe, the primary organizer of the Alabama Lyme Disease Association in 2011 and its current president, knows Neathammer’s fear and frustration — his 7-year-old son had been misdiagnosed by 25 physicians in three states before a specialist in tick-borne diseases correctly determined the child had Lyme.
In fact, one doctor told him there is no Lyme disease south of the Mason-Dixon Line because lizards here have an enzyme in their blood that “deactivates” the bacteria, making it harmless to humans, Wolfe said.
“Given how widespread this disease is, it is shocking how limited the research and education on testing, diagnosing and treating this devastating disease is,” he said.
And because there were no treatment options in Alabama, the Neathammers traveled to an infectious disease physician in Tampa.
“We were both put on IV antibiotics and immediately began improving,” she said. “It was pretty dramatic.”
While Tori, who still takes oral antibiotics, will graduate from the University of Alabama next year, Neathammer’s condition has deteriorated to include jaw and joint infections and the need for two knee replacements.
But though her physical problems continue, Neathammer persists in her efforts to awaken the public to the realities of Lyme, including the desperate need for Alabama physicians to be trained to properly diagnose and treat the disease.
“I knew how sick my daughter and I were, but when physicians couldn’t give our illness a name, they essentially gave up on us,” she said. “I have no doubt if I had not pounded on doors until we were appropriately tested, diagnosed and then treated, that we would both be completely disabled and permanently damaged.”