Lyme disease sufferer, advocate: ‘You have to fight this’
By Sean Sauro ssauro@altoonamirror.com
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DUNCANSVILLE -- Lisa Worrell had been sick for about a decade. She felt tired and weak to the point where she couldn't stand.
The symptoms were followed by seemingly endless doctors visits and hospital stays. But they yielded no results.
"They did a variety of tests," she said. "They sent me home because they didn't know what was wrong."
Some medical professionals even suggested that Worrell's symptoms were a manifestation of mental illness. She knew that wasn't the case.
"I just knew there was a reason, an underlying issue," she said.
Thorough her own research of the symptoms, Worrell discovered an illness called Lyme disease -- an infection spread by ticks.
Expensive treatments followed.
But now, Worrell volunteers her time as co-regional leader of the Altoona Area Lyme Disease Support Group with hopes of offering other Lyme sufferers resources and information that was not available to her.
Worrell, 57, a Blair County native, spoke Thursday inside a Duncansville restaurant, where she displayed pamphlets about ticks and Lyme disease, as well as bottles of insect repellent.
May has been deemed Lyme Disease Awareness Month, and, earlier this month, the U.S. Centers for Disease Control and Prevention announced that illnesses spread by mosquito, tick and flea bites tripled from 2004 to 2016.
When it comes to Lyme, blacklegged ticks -- locally called deer ticks -- are the primary transmitter of the disease.
Ticks transmit Lyme and other illnesses, known as co-infections, when they bite and latch onto a host to consume a blood meal.
Often, ticks can leave a rash like a bulls-eye around a bite, signaling that Lyme may have been transmitted.
But that isn't always the case, and, sometimes, a person who contracts Lyme won't notice a tick or a bite.
In Worrell's case, the latter was true. On Thursday, she said she was unaware of when or where she contracted Lyme.
But she remembers the years of illness she experienced before she was treated in 2013.
"There was a point where I did just want to give up," she said, explaining there were times when all she could do was lie on a couch.
In its early stages, Lyme may cause flu-like symptoms -- fever, headache, fatigue and muscle and joint pain.
As it progresses, signs of Lyme may become more severe, causing arthritis, facial drooping, irregular heartbeat and nerve pain, among other symptoms, according to the CDC.
Those symptoms can often lead to misdiagnoses such as fibromyalgia and multiple sclerosis, Worrell said.
On Thursday, Worrell also recalled the moment she overcame her despair and took action.
"I said, 'You have to fight this. If you don't, you're going to die,'" she said.
In 2013, after extensive personal research, Worrell traveled to an Arizona treatment facility, where she had a port placed in her chest, through which she was fed medications, including antibiotics, everyday for about six weeks, she said.
Worrell said her worst symptoms have abated, but she is not cured. She said she still has to maintain a specialized diet and take other precautions to ensure those symptoms remain gone.
And Worrell's crusade against Lyme is no longer personal. She and other local Lyme sufferers have united to form a support group that meets at 6:30 p.m. every second Thursday of the month in the basement of Altoona's St. Rose of Lima Church.
There, Worrell and her colleagues use their knowledge and past experience to share information with those still suffering from chronic symptoms, she said.
Worrell remembered a recent meeting, where a mother suffering with Lyme shared her story and talked about the difficulty of taking care of her child while also trying to cope with the illness.
"My heart just sinks," Worrell said.
At another meeting, three young people spoke about their relentless symptoms, she said.
"They were just crying," Worrell said. "We left there so emotional that month."
The problem, Worrell said, is that mainstream medical beliefs state that Lyme is hard to contract and easy to treat.
Lyme prevention advocates believe exactly the opposite, Worrell said, explaining there are "Lyme literate" doctors who agree.
However, lasting mainstream beliefs limit insurance coverage of Lyme treatments. Worrell said she likely spent tens of thousands of dollars to treat the disease.
Looking to reduce Lyme contraction and its associated cost, Worrell said her group also focuses on prevention.
Those working or playing outdoors are encouraged to spray themselves, including their shoes, with insect repellent like permethrin and to check their bodies, especially their creases, for ticks, Worrell said.
It also helps to shower immediately after returning indoors, she said.
Worrell is married to her husband, Craig, and has two children: Alexis Worrell, 23, and B.J. Weyandt, 33.
She remembered a recent conversation in which her son told her he was going outside to collect mushrooms.
In that moment and others like it, Worrell said she feared for his safety and hoped he wouldn't encounter ticks.
But the goal of the support group isn't to foster that type of fear. It is in place to bring additional awareness and hopefully resources to people in need.
"We want eventually to be the people who don't need a support group," Worrell said.
Mirror Staff Writer Sean Sauro is at 946-7535.