May is Lyme Disease Awareness Month, and both have said knowledge of the disease is greatly lacking in Cleveland and in the state of Tennessee as a whole.
Lexi Emrey is a 15-year-old student who once attended Walker Valley High School, but that changed because of her illness. Most recently, she has been taking online classes through Bradley County Virtual School because she could not attend regular classes.
“It’s more difficult to get things done,” Lexi said. “I don’t get to see any of my friends at school.”
The teenager who enjoys raising and riding horses with her family often finds herself sitting at home dealing with a slate of symptoms attributed to Lyme disease.
Lyme disease is spread solely through contact with blacklegged ticks, according to the Centers for Disease Control and Prevention. Symptoms include fever, headache, fatigue and “a characteristic skin rash called erythema migrans.” It can also “spread to joints, the heart and the nervous system” if it goes untreated. The disease is named after Lyme, Connecticut, where an outbreak occurred.
Lexi’s mother, Angel Emrey, said her daughter’s case went untreated, and that led to her experiencing chronic joint pain and neurological problems.
Angel said she believes Lexi was first infected with Lyme disease at the age of 7 after she was bitten by a tick. After removing the bloodsucking bug from Lexi’s scalp, Angel began to notice she was getting sick.
Thinking her daughter’s symptoms were related to the tick bite, she asked the family doctor in Cleveland to test Lexi for Lyme disease.
“He refused and told us that you cannot get Lyme disease in Tennessee,” Angel said. “After about a month she was not getting better, and I took her back and demanded he test her, and it was positive.”
She declined to say who the doctor was, but she did stress that all local doctors should consider the possibility of Lyme disease if a patient has been exposed to tick bites and is showing some of the telltale symptoms.
The disease is diagnosed by laboratory blood tests.
The CDC’s statistics on Lyme disease show that it does not exist in some states. The organization calls Lyme disease “the most commonly reported vectorborne illness in the United States.”
However, it “does not occur nationwide and is concentrated heavily in the Northeast and upper Midwest,” according to the CDC.
In 2012, the year for which the most recent CDC data on Lyme disease is available, there were only two confirmed cases of Lyme disease in the state of Tennessee. However, 28 “probable” cases were recorded.
However, the number of Lyme disease cases was higher in some neighboring states. In Georgia, there were 31 confirmed cases in 2012, with zero designated as probable. North Carolina saw 27 confirmed cases that year and 95 probable cases. Alabama saw 13 confirmed and 12 probable.
Some states, including the bordering state of Virginia, saw significantly higher numbers. Virginia reported 805 confirmed cases and 305 probable ones. The northeast and Midwest did see the highest numbers. The worst state was Pennsylvania, which had 4,146 confirmed cases and 887 probable cases.
Angel said statistics like the low number of cases reported in Tennessee likely played a part in the doctor’s hesitation to test for the disease, but she stressed that ticks don’t pay attention to state borders when hitching rides on people and animals.
The Emrey family enjoys being around horses and participating in horse shows with some coming from out of state, and Angel said it is possible the infected tick could have come from the horses. However, she said it could have easily just come from Lexi playing outside.
“You can’t draw a line around the state and say that [ticks] can’t come in with Lyme disease,” Angel said.
Lexi said her battle with Lyme disease has been long and exhausting.
After the first doctor hesitantly tested 7-year-old Lexi for Lyme disease, she saw another doctor who prescribed a series of antibiotics. They helped then, but Angel said Lexi “did not get enough antibiotics to eradicate the disease from her system.”
It was in August 2013 that she began having problems again.
Headaches, muscle aches, fatigue and other familiar symptoms returned. However, the family again found it difficult to get a Lyme disease diagnosis.
“When she began to worsen this past year, we took her to a neurologist at Vanderbilt and a neurologist and an infectious disease doctor at Children's Hospital in Knoxville. All of them told us she did not have Lyme disease, despite having three positive tests. All of the doctors said that it is impossible to get Lyme disease in Tennessee.”
Meanwhile, Lexi began having more problems. The mother and daughter explained that there were motor skill problems that made it difficult to walk up and down stairs safely.
Her memory and concentration are not what they used to be. Lexi said that sometimes her vision will suddenly go blurry, and she has even experienced temporary paralysis that makes her unable to move her limbs for a few minutes — an hour at most.
Angel said she has noticed it makes her daughter very sensitive to lights and noises some days.
“It’s really manifested itself neurologically,” Lexi said.
While she still is able to leave the house, her trips out are planned ahead of time. She will get lots of sleep the night before she wants to attend a Sunday morning church service with her family, for example.
She has been able to get out and ride the horses she loves, but they are often short rides that are planned in advance.
“You have to, like, save up your energy,” Lexi said.
At the urging of her pediatrician to seek a specialist after the symptoms got worse, the family sought out one from out of state.
“Lexi was officially diagnosed with neurologic Lyme disease in September 2013 by Tara Fox, a practitioner at Jemsek Specialty Clinic in Washington, D.C.,” Angel said. “They told us that they believe she never fully recovered from the initial bite and had been reinfected over the years.”
Lexi began a course of strong oral antibiotics, which often came in frequent doses and made her sick. After a few months, the family decided Lexi should try taking her medicine intravenously, so it does not go through the stomach.
She now has something called a PICC line in her arm, which is basically a needle and tube that can be hooked up to an IV at any time. Angel administers the antibiotics by IV at home from anywhere from two to four hours a day, and Lexi makes regular visits to a hospital to ensure that the line is kept clean to prevent infection.
Angel said the plan is to have the line removed at the end of a nine-month period.
Lexi’s illness has had an impact on the family both timewise and financially. Angel said many insurance companies do not recognize cover Lyme disease treatments other than oral antibiotics.
“We have to travel to D.C. monthly for doctor visits,” Angel said. “We have already spent about $40,000 this year for treatments because Lyme IV is not covered by insurance.”
As challenging as she said that has been, Lexi said she has noticed an overall difference in how she feels. She just wants the disease to be completely gone.
While she and her mother both expressed a desire for more people to know about Lyme disease, they said those who do know about it have some misconceptions.
The disease is not contagious, and it only infects the person who was bitten by the tick, according to the CDC.
Lexi said she likes to point out that Lyme disease is real, even though it may not be prevalent in Tennessee. She said she thinks patients should do their own research and be unafraid to ask doctors to explain their diagnoses.
But most of all, the mother and daughter want to share how important it is to protect against getting bitten by ticks in the first place.
Both Angel and Lexi said they would urge people to do whatever they could to prevent tick bites, including wearing insect repellant that specifically says it is meant to ward off ticks.
“An ounce of prevention is worth thousands of dollars of cure,” Angel said.