23-year-old Michigan woman was misdiagnosed for years before it was determined she had Lyme disease.
Hillsdale resident battles Lyme disease for
more than a decade
By Matt Durr
Feb. 3, 2013 1:20 pm- Alexis Lopresto (left) and her fiancee James Russell walk their dogs McKyle and Tank. Lopresto recently diiscovered that she has been battling Lyme disease for more than a decade. In January 2011, Lopresto nearly died from a rapid heartbeat cause by Lyme disease. MATT DURR PHOTO
- matt.durr@hillsdale.net
HILLSDALE — Sitting in her Hillsdale apartment, 23-year-old Alexis Lopresto knows it’s time to walk her dogs McKyle and Tank.
The daily routine is something she dreads.
It’s not that she doesn’t want to take care of her animals, even if Tank, a Newfoundland-Lab mix, does weigh some 200 pounds. It’s the thought of climbing up and down three flights of stairs that is the most worrisome.
Always a sick child, Lopresto has been in and out of hospitals for the last five years as countless doctors struggled to find a reason for her sickness. During that time she was diagnosed as having multiple sclerosis, lupus, muscular dystrophy, fibromyalgia, chronic fatigue syndrome and cancer.
At one point the problems became so bad she was basically issued a death sentence.
“One doctor said to my mom, ‘You need to take her home. We don’t know what’s going on, but she’s lucky to be alive right now. You need to take her home so that she can see family,’” Lopresto said about a January 2011 episode.
Luckily for her, the doctors, as had been the usual case for Lopresto, were wrong.
None of those diagnoses turned out to be the correct one. It wasn’t until Lopresto started seeing Dr. Theresa Birkmeier-Fredal in Rochester Hills that it was determined she was stricken with Lyme disease, a rare but powerful illness spread by ticks that causes her constant severe pain regardless of treatment.
The Branch-Hillsdale-St. Joseph Community Health Agency reported just six cases in 2012, four of which were in St. Joseph County. Hillsdale County had only one reported case. Lobes said her data suggested at least seven people from Hillsdale County contacted her and reported being diagnosed in the last two years.
She isn’t out of the woods yet, but Lopresto is on the mend and is now looking to raise awareness of a disease that many in the county are unaware of.
“I’m fighting to be in a remission state,” Lopresto said. “I want people to know that it’s here because I don’t want people to just blow it off. It could have been way worse for me.”
Unknown issues
It started when she was a teenager.
Lopresto remembers a time when she was 15 when she was suffering from a low-grade fever and slept for two days straight. Doctors diagnosed her as just being a normal teen who needed sleep when she was sick.
“When my mom would take me to the doctors, they would always dismiss it because I was stressed because I had split parents,” Lopresto recalls.
Doctors thought the stress was weakening her immune system.
Over the years, as the various false diagnoses piled up and Lopresto’s symptoms worsened, doctors struggled to find an actual cause, highlighted by the January 2011 episode that could have killed her.
Lopresto had been experiencing a rapid heartbeat for years, but one day her heart started pumping at 200 beats-per-minute. After being rushed to the emergency room, she was diagnosed as having a panic attack and sent home after she calmed down.
On the way home, the symptoms returned, along with a loss of vision. Unable to figure out what was wrong, that was when doctors told her mother she should go home to be with family.
“I was pretty sure I was going to die,” Lopresto said.
Two months later, she was on her way back to the hospital after she lost her vision again and her ability to speak.
“My mom said I was basically in a seizure state,” Lopresto said while fighting back tears.“I could hear her, but I couldn’t do anything to show her.”
After surviving another frightening incident, Lopresto finally got fed up with doctors in the area. When she was told by one doctor that her issues were psychosomatic, she reached out to the Michigan Lyme Disease Association for help.
The MLDA has been in business since 1989 and according to Lisa Lobes, the MLDA president, this sort of confusion is common. Lobes said that on average, Lyme disease patients see as many as 10-12 doctors before they are properly diagnosed. Lobes said she saw more than 40 doctors in her case. Lobes contracted the disease in 1989.
“I spent almost three years with an MS diagnoses before I found out it was Lyme disease,” Lobes said. “Part of the problem is the criteria you have to meet to be counted as a case.”
While most people assume you will get a bulls-eye rash if you have been bitten by a tick, only 52 to 63 percent of people will show the rash according to Lobes. Another problem is that so many of the symptoms mirror that of other diseases, making it hard to detect right away.
“Most people by the time they have called me, unless they’ve been to a talk we’ve been at, they have been looking for a while,” Lobes said.
There are also 125 known strains of Lyme disease in the United States, but testing for all 125 strains is not accurate yet.
Lopresto was one of those people who had reached her breaking point. But shortly after contacting the MLDA, Lopresto finally got the attention she was in need of.
“She (Lobes) is always there to help me, no matter what,” Lopresto said.
Soon, she was on her way to Dr. Birkmeier’s office.
'She saved me'
After her first visit to Birkmeier, Lopresto began a treatment of antibiotics that are designed to help with the effects of Lyme disease. At first the antibiotics made her feel worse, a sign that they are working. About a month later, she started to feel better.
“It’s definitely a step in the right direction,” said James Russell, Lopresto’s boyfriend. “That’s what’s scary about it, is how many people out there are being treated for MS right now and they have Lyme disease.”
Lopresto also found out that she probably contracted the disease sometime after she turned 10 years old based on the amount of antibodies that were in her system when she started treatment.
“She saved me,” Lopresto said about Birkmeier.
Treatments are expensive, and because of the high costs involved Lopresto started working a job in town so that she could afford her medication. However, she soon lost that job because her symptoms flared up and cost her a few days at work. When she returned, she was informed that she had been let go.
Undeterred, Lopresto says she is feeling better each day and regardless of the letdown from being fired, she is determined to keep making progress.
“It really lights a fire under me. They don’t know what I feel inside and it makes me want to prove to them I can do it,” Lopresto said.
In January her heart rate spiked again and a trip to Hillsdale Hospital was necessary. When she arrived, doctors and nurses asked her if she had any conditions they should know about, she told them about her Lyme disease.
They didn’t believe her.
After convincing them to run the tests, sure enough, the results were positive, just like she told them. That lone episode has been the only setback in months for Lopresto, who says she is noticing more improvement as the days go on.
As her progress continues, she is dedicated to making sure people in Hillsdale County don’t go through the same battle she did.
“What I want people to know is that Lyme disease is here. I went to so many doctors that said ‘lyme disease isn’t here, it’s in New York and the western part of (Michigan),’” Lopresto said. “But it is here and it’s not that uncommon.”
Lopresto says that while Lyme disease hasn’t ruined her life, it has limited her ability to enjoy her youthful years. Still, she is trying to move past the struggles and start living a “normal” life.
As her condition improves, Lopresto said she is looking forward to going back to college to become a dietician. Earlier this year, James proposed to her and of course she accepted; while she wants to have a family of her own, she knows there is a chance she could pass the disease on to her kids. Thinking about that possibility brings tears to her eyes.
For now Lopresto is content taking it one day at a time and slowly regaining a semblance of stability.
“I would like to just be able to live again,” she said. “I want to gain independence from myself.”
