It was May 2003. Maggie Spuhler, now a grade school teacher at Wheatland-Chili Central School District, was in her freshman year at State University of New York-Oswego. She had also just been diagnosed with Lyme disease.
At such a young age, Spuhler had a long, difficult journey ahead of her. It’s a story many of us know because we’ve either lived it, or we’ve heard stories of those who have.
“There is a scripted storyline for Lyme disease,” Spuhler says. “It always starts with, ‘I’ve been tested for all these conditions and nobody knew what was wrong with me.’”
Master of Mimicry
In December 2002, after wrapping up her first semester at SUNY-Oswego, Spuhler went home for Christmas break in Caledonia, N.Y. But instead of relaxing, she was concerned over her mysteriously and painfully persistent swollen knees and elbows.
Throughout the second semester, Spuhler’s joint pain became severe. Soon, other areas of her body—shoulders, fingers and arms—began to hurt. Her knees and elbows appeared bruised. She was plagued with headaches and extreme fatigue.
She went to the campus health center for answers, but the staff was unable to pinpoint a diagnosis. Spuhler’s Lyme test returned negative—a false negative as she’d later learn. She was also tested and counseled on lupus, various cancers, and multiple sclerosis—diseases that share many of the same symptoms as Lyme disease.
“I was 18 and alone and didn’t know what to do,” she says. “And I was getting worse.”
Spuhler then decided to go to her family doctor. But no one could figure out what was wrong.
At this point, still in her second semester, Spuhler was practically bedridden and very ill. She couldn’t bathe or take care of herself. Climbing stairs was exhausting and painful. She thought she was dying. Despite all this, somehow she persevered through her first year of college.
A Fortunate Conversation
Understandably, Spuhler’s parents, Ron and Robin, were beside themselves with concern. One day, Ron was describing his daughter’s symptoms to a coworker. A colleague who had experienced Lyme disease overheard the conversation and told Ron that Lyme disease was a likely culprit. He recommended Dr. Joseph Joseph, a physician based in Hermitage, Pa., who specializes in Lyme disease. Ron made an appointment.
Upon meeting Joseph, Spuhler shared her symptoms and story, but Joseph was doubtful she had Lyme disease.
“I never saw a tick. Never saw the telltale bull’s eye rash. And my first test for Lyme disease came back negative,” Spuhler says.
Still, Joseph wanted to be thorough so he ordered a blot test, a more accurate assessment of Lyme disease. It came back positive.
“That diagnosis finally gave me an answer,” Spuhler says. “I asked Dr. Joseph, ‘Can you cure me?’ He said, ‘Yes, but it will take some time.’”
Setbacks and Surgery
Lyme is a bacterial infection and, because there many different strains, the challenge is finding the right combination of antibiotics capable of eliminating a patient’s specific strain, Joseph explained to Spuhler. Patients who are in the late stages of Lyme, like Spuhler, often require strong antibiotics. Additionally, the antibiotic cocktail has to change as a patient’s body develops a tolerance to the medication.
At one point, Spuhler was on IV treatment for six weeks; a period she describes as her darkest days. Initially, she was hopeful that the blast of medication would dramatically improve her condition. She wore a bandage to cover up her port, asked her roommate to help wrap her arm, and had a nurse come to her dorm room to care for her.
Ultimately, the IV did nothing. Spuhler was devastated.
Spuhler’s medical battles deepened. Her Lyme disease affected the cartilage in her knee joints that could only be remedied with surgery. Soon after, she had to have the same surgery on the other knee.
Throughout all of this, an abnormal lump was found on her breast. The lump was surgically removed and proved to be benign.
In good times and in bad
Medical hardships spilled into college life. Spuhler found hope and strength from within herself and her family—her parents and two brothers, Matt and Bryan. But her joints were in chronic pain. She was exhausted, depressed, pale and ill.
“People teased me because of the way I walked,” Spuhler says. “People stared. They made comments. They got annoyed of how I was always sick. And I never had energy to go out.”
Then, at a moment when she needed it most, Spuhler was invited to a get-together at a friend’s house. Feeling uplifted, she pulled together all the energy she had and went. That’s the night she met John, her future husband.
That night, John asked Spuhler out on a date. A few days later, they met up and just talked. Spuhler told John about her Lyme disease. He was caring and empathetic and told her he’d help her through it.
John kept his word, driving Spuhler to appointments, carrying her up the stairs, and even tying her shoes for her.
“He gave me the faith I needed,” Spuhler says.
That faith brought Spuhler and John to a happy ending. Between 2006 and 2007, Spuhler’s symptoms tapered then disappeared completely. Joseph declared Spuhler free from Lyme. And, in 2009, John and Spuhler said “I do.”
“When we said ‘in sickness and in health,’ everyone knew how true it was,” Spuhler says.
Today, Spuhler and John have three sons, 4-year-old Jack, 3-year-old Owen and Connor John Spuhler, who was born in October.
Her battle with—and ultimate defeat of—Lyme disease gave Spuhler a newfound perspective and strength. And she now cherishes her good health and high energy and the fact that she can share it with John and their three children.
“There is good that came from my struggles,” Spuhler says. “I know strength. I gained knowledge on being a courageous mother from my Mom’s example. And above all, I ended up with the man of my dreams.”