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Sharing Mayo Clinic: Complex diagnosis reshapes student’s future
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When Reilly Steidle came to Mayo Clinic in the summer of 2013 at the age of 20, she brought with her two rolling suitcases full of medical paperwork and a hope that the physicians could make sense of the recurring headaches, chronic fatigue and widespread pain she’d been dealing with for two years.
Reilly had been a healthy college student majoring in business at Northern Illinois University in the fall of 2011. But by the end of the school year, the Plainfield, Illinois, resident had dropped out, debilitated by her mysterious symptoms. Reilly spent the summer of 2012 visiting doctors.
When no one could decipher her symptoms, she decided to try another approach. Reilly went to a chiropractor, who asked to see her MRI images. After looking at them, the chiropractor urged Reilly to get an enzyme-linked immunosorbent assay test, confirmed by a Western blot test, to check for Lyme disease. Reilly did so, and on her 19th birthday, she received the news that the test results were positive.
Reilly had a standard 60-day course of antibiotics to treat Lyme disease in the fall and winter of 2012, but her symptoms never really went away. Her hometown doctor, having exhausted all of his resources to cure her, suggested she visit Mayo Clinic.
Starting from scratch
Reilly’s initial encounter with Mayo Clinic included appointments in the departments of Neurology, Rheumatology, Dermatology and Primary Care at Mayo's Rochester campus. Among the possible conditions investigated were lupus and multiple sclerosis.
“They were aware that I had Lyme disease, and they were trying to figure out if it was completely gone, or whether I had something else going on, and what exactly it was,” Reilly says. She also had developed psoriasis during her struggle with Lyme disease.
The sudden onset of new skin symptoms, coupled with widespread pain and fatigue, made it appear that she could have developed an autoimmune disorder, separate from the Lyme disease.
“I stayed at Mayo for the whole summer,” she says. "I was in and out of appointments for about three months.”
“At Mayo, I always felt the doctors were there for me, and they were going to go figure out what was wrong with me. The whole level of professionalism is great.” — Reilly Steidle
During her visits, Reilly was impressed with the thoroughness of her care team’s investigation as its members worked to uncover the source of her maladies.
“I always felt the doctors were there for me, and they were going to figure out what was wrong with me,” she says. “The whole level of professionalism is great. You really do feel that sense that everyone there is really trying to listen to you, and everyone is genuine.”
Reilly’s blood tests showed elevated levels of C-reactive protein, which is an indicator of inflammation, as well as high levels of copper and the protein that carries copper.
“High copper can cause chronic inflammation that mimics the neurological symptoms of Lyme,” Reilly says. “That was really important, because it was treatable, and no one had actually thought of that before.”
Based on her physicians’ recommendations, Reilly took steps to lower her copper level. At a follow-up six months later, not only was her copper level back to normal, but Reilly’s neurological symptoms — ranging from problems with balance to temperature regulation and a facial tic — had disappeared.
Answers at long last
Reilly’s care team also wanted to root out the source of another problematic symptom — falling and staying asleep. Mayo Clinic sleep specialist Maja Tippmann-Peikert, M.D., recommended a sleep study in the Center for Sleep Medicine.
Rather than showing that Reilly struggled to fall asleep, the test revealed the opposite. She went into the rapid eye movement, or REM, stage of sleep immediately after dozing off. A second test, a multiple sleep latency test, was performed to see if Reilly had narcolepsy — a chronic sleep disorder that causes overwhelming daytime drowsiness and sudden attacks of sleep.
“During the test, I was asked to fall asleep for 15 minutes every two hours, and then after I slept, I had to journal,” Reilly says. “And in every journal, when I said I wasn’t sleeping, when I went in to see the test result, it showed that when I thought I wasn’t sleeping, I was actually dreaming.”
Reilly admits that for years, people in her life had told her she would fall asleep during the day. She grew defensive and denied it, claiming she was just tired from working too hard. Although she cannot pinpoint when her narcolepsy began, Reilly says that it was during her struggle with Lyme disease in early 2012 that her sleep problems started to have a noticeable effect on her daily activities.
In addition to neurological diagnoses, Reilly’s doctors at Mayo Clinic also confirmed she had fibromyalgia, a disorder characterized by widespread musculoskeletal pain, fatigue, and sleep and mood issues.
“A lot of people have invisible diseases, and I think it’s very important to empathize with those people,” she says. “With my friends and family, they knew me before I was sick, and it’s hard for them to interpret why this girl, who could previously do the farm chores, now takes a shower and she’s tired. The experience really changed the way I view life and conduct myself.”
Adaptation and inspiration
To better understand and manage her fibromyalgia, Reilly attended Mayo Clinic’s fibromyalgia clinic. While she was there, she made yet another discovery about her health. She had POTS, or postural orthostatic tachycardia syndrome.
“I went to the fibromyalgia clinic to better my lifestyle, and I actually learned something about myself, too,” she says.
Not only has Reilly endeavored to change her lifestyle to accommodate her limitations, she also decided to switch gears academically.
“I came back to school after Lyme, and decided I needed to be the best,” she says. "I was on a totally different career path before I got sick. Because of the challenges I faced before I came to Mayo and my Mayo experience, I was inspired to change my career path to help people who have chronic pain or these symptoms.”
“I was torn up about my diagnoses for a while. But I decided the only thing you can do is take the challenges you were given in life and make those same challenges easier for other people.” — Reilly Steidle
Reilly switched her major to medical lab science and began to seek out new opportunities, including a summer internship in the components lab of Mayo Clinic’s Division of Transfusion Medicine. During her internship, Reilly internalized Mayo’s philosophy of always putting the patient first.
“It was humbling and awesome to be in a place where they were doing things right and how I would want them to be done,” she says.
Since then, Reilly has assumed a number of leadership roles. She was elected chair of the American Society for Clinical Laboratory Science, Illinois Student Forum. She’s published articles about Lyme disease, and she seizes opportunities to educate herself about disease states, so she can better serve the community after graduation.
As she finishes college, Reilly continues to look for additional ways to contribute, participating in patient safety committees, and organizing events that raise awareness of medical conditions and inspire other young professionals to get involved.
“I was torn up about my diagnoses for a while,” Reilly says. “But I decided the only thing you can do is take the challenges you were given in life and make those same challenges easier for other people.
HELPFUL LINKS:
- Explore Mayo Clinic’s Department of Neurology.
- Read more about Lyme disease.
- Check out Mayo Clinic’s Center for Sleep Medicine in Minnesota.
- Connect with others who have multiple and complex diagnoses on Mayo Clinic Connect.
- Schedule an appointment.
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