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November 21, 2016

Complex Diagnosis Reshapes a College Student’s Future

By SharingMayoClinic

Plagued by debilitating symptoms, Reilly Steidle turned to Mayo Clinic. A comprehensive evaluation revealed a range of challenging but manageable issues, and gave Reilly a new outlook.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.


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Tags: Center for Sleep Medicine, Dr. Maja Tippmann-Peikert, Infectious Diseases, Lyme Disease, Neurology & Neurosurgery, Neurology & Neurosurgery, POTS, Transfusion Medicine

I have just been diagnosed with Fibromyalgia. After doing my research on Mayo Clinic and came across your story, I have some hope that people may start to understand why I have been the way I am. I struggle with fatigue and achy all over that has limited my lifestyle and work. I find that if people don’t see your illness they don’t understand and I am tired of complaining myself. I am not lazy…I’m restricted in what I use to be able to do. Please continue to educate on Fibromyalgia.

Your story continues to be an inspiration and a light of hope. Please continue to post all that you are doing to feel better.

As a parent getting ready to send her daughter off to college and a diagnosis of lyme and fibromyalgia – I am forever thankful for your story. It has been quite a journey the last 6 months. Please continue to share how you have learned to live with fibromyalgia and ways of working through and preventing symptoms. We are finding it is a all hands on deck approach with nutrition, physical therapy, naturopathic care, and are in a search for a rheumatologist that understands fibromyalgia with proactive care. Keep us posted.
Much Happiness and Thank you!!!

I was just diagnosed with fribromyalgia today. I have been dealing with pain and being tired all the time for about 6 years now. I cried in the doctors office beause i was so relieved to have an answer. I would have to call out of work because of the pain and i am just so exhausted. My family would say i am a baby or i am faking it. The doctors would give me pain killers and send me on my way. I finally had enough i went to a another new doctor and told him im tired of being called crazy by doctors. I am so thankful they finally believed me. I am only 21 and i have been suffering since 15 years old. I finally have an answer.

The problem is blood tests are not always accurate. Many diseases don’t have the tests required to evaluate your condition. Doctors that diagnose base on symptoms and are specialized in that specific disease are the best ones to consult with, if you have unexplained symptoms. hard part is finding the right specialist.

Are there any doctors in the Phoenix Mayo Clinic who specialize in Lyme and would follow the same treatments? I would like to know specific treatments that were done and how effective they were. I appreciate your sharing your experience and providing hope.

Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

You need to find a International Lyme and Associated Diseases Society (ILADS) doctor.
I have Lyme and based on my symptoms was able to narrow down my disease and find a specialists. In particular I have Bartonella which is a co-infection causing neurological symptoms. So I have been on antibiotics for 8 months and have had some improvement in my symptoms. The type of antibiotics that works depends on the patient, so it is a trial and error with monthly feedback to the doctor. Also taking alot of probiotics is part of the treatment. But the key is to find a doctor on ILADS because they are the expert that can help you.

My daughter was slammed in the head with the boom from her sailbot in 2012. Since then she has been bed ridden from pain in her head, neck and back. She contracted Lyme about 2 1/2 years after, so now she REALLY feels horrible. The Neurologist has helped quite a bit, he has tried different antibiotics but they all make her sick. She has been in pain for 5 1/2 years-completely missing high school. This has cost so much money. Is the Mayo Clinic expensive? Do you keep flying back and forth to appts?

Thank you for your note. If you would like to seek help for your daughter from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511). If you have billing and insurance questions, please visit the Patient Visitor Guide: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance.

I have suffered for about 8 years and was just recently diagnosed with fibromyalgia. Tested positive for c-reactive protein, but rheumatologist says no significant arthritis, so not lupus. I have had headaches and migraines for over 30 years, facial pain that I was told was TMJ. Now, not so sure it isn't trigeminal neuralgia, involves back of skull, ears, facial swelling, in addition to extreme facial pain. Friends do not understand why I am so grateful for texting rather than having a phone against my face. Along with suspected lupus, I have been told I have MS, also. I have had four MRIs. All show brain lesions. First rad said MS, second sat with me (a neurorad) and told me I had two kinds of lesions, some small that may be from migraines or MS, and another larger one that he, in his 35 years of practice, has never seen. Another rad said stroke, another findings nonspecific. I was going to also have a sleep study, but when you know the reason you don't sleep is because you're in a race because of RLS, what's the point. I have such low points every day, I think I might fall down from weakness, or do too much and feel as though I have a bad case of flu. Medical bills have bankrupted me, and I had to give up job I worked so hard for, graduating top of my class in nuclear medicine technology. Husband wants me to keep up with him, but I can't. Also have Hashimoto's. All new docs determined my illness is from hypothyroid, but TSH still in normal range. I am losing my mind, having no fun, while no one can decide and treat me appropriately.

Thank you for your comment. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

Hi! I really liked your story. I was very interested because I was diagnosed with sleep apnea (since about 15 years ago) and lately, let's say since about 6 months ago, I have been noticing that my body aches all over, but specially after I walk, or after I cook. It is an unbearable pain all over my body, not only in the joints. So that, I'm unable to exercise because the next day I won't be able to move freely because of the pain, and therefore I'm gaining weight consistently, which makes me very uncomfortable and there's nothing I can do to lose the weight. I'd like you to tell me what kind of test should I ask my doctor to perform in order to find out if it fibromyalgia what I have, or what can I tell her. Thank you.

Thank you for your note. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.

Reilly, you are inspiring…hanging in there until you got a diagnosis!! I can't think of a worse time to be totally sapped of energy than starting college.

In my own case, I was diagnosed with psoriasis in 1976, while studying for the bar exam. Not much in the way of treatment then except for tar and the light box. I had numerous hospitalizations at Columbia-Presbyterian for the next 10 years and then I went into remission, only to be diagnosed with psoriatic arthritis in 1998. It progressed quickly and I went on disability in January 2002, as much due to fibromyalgia as to PA.
My fatigue totally drained me for a couple of years.

I started taking Remicade in 2004, every 2 months, and it did a nice job for me. I'm still taking it and don't have extensive joint erosion, as I might have without the Remicade. However, I am again suffering from draining fatigue and wondering what to do. A psychiatrist I saw back in 2002 wanted to try me on Provigil but I didn't take it. Has anyone out there taken anything for disabling fatigue and fibromyalgia, and, if so, what?

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