Back from the brink: Sheila Lewis
Sheila Lewis doesn’t remember much about the battle against autoimmune encephalitis that almost took her life, but her family can still recall every heartbreaking moment. With Sheila in a coma for 12 days, they had resigned themselves to the fact that they were losing their beloved 61-year-old wife, mother, and grandmother. It looked to be the end of what had been a strange and sudden deterioration in Sheila’s health.
Two months before, the first hint of trouble came when Sheila began experiencing sudden memory loss. Her neurological symptoms only worsened from there. Soon she began to forget the names of those closest to her — her children’s names, her grandchildren’s, and then even her own.
Feeling like her brain was in a fog, Sheila went to a local hospital in Fargo, North Dakota, where testing offered no definitive clues to what was causing her continued neurological decline. “She didn’t get better. Instead, she continued to get worse,” Sheila’s daughter Brandy Arends says.
After Sheila lost the ability to speak, breathing and feeding tubes were put in, and she was moved to the hospital’s intensive care unit. It was then, with no improvement in sight, that Sheila’s family asked for her care to be transferred to Mayo Clinic in Rochester, Minnesota.
“She was intubated and in a coma when we got accepted into Mayo,” Brandy says. “She was life-flighted to Rochester and admitted to the ICU.”
At Mayo, Sheila came under the care of a team of doctors that included Anastasia Zekeridou, M.D., Ph.D., assistant professor of Neurology, and Laboratory Medicine and Pathology, who at the time was a Clinical Neuroimmunology fellow working with Andrew McKeon, M.B., B.Ch., M.D. “She came to us very sick,” Dr. Zekeridou says. “The initial suspicion was that she was suffering from autoimmune encephalitis.”
Drs. Zekeridou and McKeon embarked on a testing regimen for Sheila that revealed a surprising finding. “We found in our laboratory that she had a particular antibody called AMPAR receptor antibody,” Dr. McKeon says. “Antibodies are a robust part of the human immune system that are easily measured in blood and spinal fluid. Sometimes you can find an antibody that’s indicative that the person’s own immune system is fighting their body.”
That seemed to be the case for Sheila.
“In this situation, the AMPAR receptor is a critical receptor in all neurons and nerve cells in the brain,” Dr. McKeon says.
“If you have an antibody against that, it really spells trouble for your brain and can result in confusion, loss of consciousness, seizures, and then progressively worse things from there. It’s a very rare antibody and a very rare diagnostic test to be positive in our lab. But when we find a positive, it really means something.”
In Sheila’s case, it meant additional testing was required right away. “These antibodies are sometimes associated with cancer,” Dr. McKeon says. “The immune system is often triggered to behave in this bad way by a cancer somewhere in the body.”
That proved to be true for Sheila. The testing revealed she not only was suffering from autoimmune encephalitis but also early stage melanoma. “After we informed our colleagues in the ICU about her test results, they immediately began treatment,” Dr. McKeon says.
Sheila’s treatment plan included hydrosteroids given intravenously to help suppress her immune system. “We also did a plasma exchange where we took out all of the bad antibodies from her bloodstream,” Dr. McKeon says. “Then we gave her medication to suppress the production of cells that were making the bad antibodies. When you do all of that, you can potentially reverse the situation.”
Unfortunately, that didn’t happen. At least not right away. “After she was treated, she didn’t show a lot of response initially,” Dr. McKeon says.
At that point, Sheila’s family made the difficult decision to remove her from life support and move her into Brandy’s home so that she could live out the rest of her life in a familiar environment. “We wanted her to be comfortable,” Brandy says. “So we brought her to my home and opened up all of the windows. My kids spent time with her every day. They painted her nails.”
Then, after 12 heart-wrenching days, the treatment began to work, and Sheila showed signs of making a comeback. “She started doing things that we’d been told she’d never do again: moving, becoming more alert, asking for water, laughing,” Brandy says. “I immediately contacted her doctors at Mayo, and they said they wanted her hospitalized again in Fargo because, by that point, she’d gone 12 days without food, water, or medication.”
Once in Fargo, Sheila’s turnaround continued. “She started progressing a little more each day,” Brandy says. “Her care team at Mayo would consult with her Fargo team daily. Ultimately, her Mayo team decided they wanted her back in Rochester.” So back to Rochester Sheila and Brandy went. “They took her by ambulance, and I followed close behind,” Brandy says.
Once at Mayo Clinic, Sheila’s care team was at a loss for words. “They’d never seen her in a state other than intubation, so they were blown away when she started coming back to life,” Brandy says. “She continued to get better and stronger with each new day, and she eventually started doing physical therapy.”
And then, in mid-December, Brandy and the rest of the family got an early Christmas gift when Sheila was discharged from the hospital and sent home to live her newly reclaimed life.
“I couldn’t believe it,” Brandy says. “But once we got to Mayo, I felt like it was my mom’s second chance at survival. I felt like we were given a whole new opportunity and chance to figure out what was wrong. All the staff — from the nurses to the doctors to the lab personnel — were amazing.”
Just two months after the start of her symptoms, Sheila walked herself into Dr. McKeon’s office at Mayo Clinic for the first of many follow-up visits. “She was basically back to normal,” Dr. McKeon says. “It was amazing.”
She was a living, breathing testament to the importance and value of the comprehensive laboratory testing offered to her by Drs. Zekeridou, McKeon, and others within Mayo Clinic Laboratories.
“We screen for this antibody as part of our standard practice, and by not only identifying but also then measuring it, we were able to tell her doctors in the ICU that her own immune system was essentially attacking her brain, and that she needed to receive treatment to reverse that,” Dr. McKeon says. “Sheila’s story illustrates how our specialized testing gives us the ability to quickly recognize a treatable form of brain disease that, if not treated, can result in dementia, chronic seizures, chronic psychiatric illness, or death. The comprehensive testing panels we have at Mayo Clinic allow us to intervene with treatments that can reverse that process.”