Sarah Nader -
Assistant track coach at Cary-Grove, Jim Miller poses for a portrait at Cary-Grove High School after track practice on Friday, April 19, 2013. Miller was diagnosed with ALS in February, then a month later found out it was Lyme's disease.
Sarah Nader - Assistant track coach at Cary-Grove, Jim Miller poses for a portrait at Cary-Grove High School after track practice on Friday, April 19, 2013. Miller was diagnosed with ALS in February, then a month later found out it was Lyme's disease.

Sitting on the couch together and watching DVDs isn’t Jim and Vicki Miller’s style.

The Millers are more about hiking or biking or playing golf or working out on their Total Gym, the fitness contraption Chuck Norris endorses that supposedly hits all body parts.

Recent months have been frustrating for Jim, who lacks his usual energy, and for Vicki, who finds motivation difficult without her hiking/biking/exercising partner.

“That part’s really sad,” Vicki said.

Sad, but not hopeless.

There was little hope two months ago, when Jim, a 56-year-old physical education teacher and coach at Cary-Grove, was examined by a neuromuscular specialist who diagnosed him with ALS.

Lou Gehrig’s Disease, as amyotrophic lateral sclerosis is known, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It is a death sentence.

A month later, however, the Millers found out Jim had been misdiagnosed. Tests eventually indicated Jim’s weakness on his left side, his fatigue, his lack of balance, all were caused by Lyme disease, an infectious disease caused by bacteria from tick bites. Lyme symptoms can be similar to those of ALS.

“We had tears in our eyes because we had hope,” Jim said. “I’m struggling right now. I’m doing what I need to do. I’m weak, I get fatigued during the day and all of a sudden I’ll have periods where I feel a little bit better. I’m hoping in six months I’ll get rid of the cane and get back to moving like I was in the past.”

Always an athlete

Jim Miller grew up as a four-sport athlete in Kohler, Wis. He played football in the fall, wrestled in the winter, competed in track and field in the spring and played high school baseball in the summer.

A big and powerful-looking man, Miller attended Northwestern University, where he played football and wrestled.

His active lifestyle kept him fit and belied his age. His 6-foot-2, 235-pound frame makes him look like he still could hold his own in the weightroom with the throwers he coaches on C-G’s boys track team.

Watching Miller slip with his physical problems was painful for those around him during the past six months.

“He was a guy who rode his bike everywhere,” Trojans boys track coach Layne Holter said. “A guy who went out of his way to eat nutritious food and exercise and looked much younger. To see him turn into an old man before your eyes is very disturbing.”

Most of the problem stemmed from Miller not knowing what was causing his body to fail.

What was wrong?

In the fall, Miller noticed problems with his left knee, then in his neck. He thought maybe he would have to have his left knee replaced and the limping was causing other problems. By December, after seeing various local doctors, he found a neurologist in Evanston.

The date of Feb. 21 is etched in the Millers’ memories. They were in shock when the doctor told them Jim has ALS.

They cried.

“Oh, my God!” Vicki said. “It was devastating.”

Jim tried to keep his condition a secret, and in the meantime a friend sent him an article published by Dr. David Martz, an oncologist from Colorado Springs, Colo., who had been diagnosed with ALS and later discovered he had Lyme disease.

It was a glimmer of hope.

Jim started looking into things. He sought out C-G Spanish teacher Jennifer Ellis-Schuetz, who had battled Lyme disease for several years. Ellis-Schuetz directed Miller to Dr. Steve Meress at Fox Valley Wellness Center in Fond du Lac, Wis.

Another date the Millers have memorized is March 21. On that day, as Jim had suspected and hoped, tests showed he had Lyme disease.

The Millers cried again.

“It still kind of scared me, too, because I said, ‘Does this mean he doesn’t have ALS?’ ” Vicki said. “You can’t say that. Only time will tell as he starts to get better.”

Jim thought back to when one of his doctors told him ALS symptoms should manifest in more than two limbs. His problems were only on his left side.

Also, a doctor with Meress viewed Miller’s blood under a microscope and saw the spirochete bacteria, which confirmed Miller has Lyme disease.

A long road back

Right now, Miller doubts he could lift a five-pound dumbbell above his head with his left arm. The Total Gym workouts have been replaced with two trips a week to Cary Physical Therapy. Currently, Miller is going through a detoxing period before he will receive antibiotics intravenously.

“In order to get those treatments, it had to be clinically diagnosed,” Miller said. “My blood tests were sent to California and came back positive, so now insurance will cover those for a while. It could take six months before I start seeing improvements.”

Miller continues teaching and coaching. He is not able to teach the yoga classes he was during the first semester, but might be able to do so next year.

Miller cannot wait to get off the couch and join Vicki for a walk. Or go play 18 holes without a cart. Or bike ride through Moraine Hills State Park near their home in McHenry.

The sedentary lifestyle does not suit the Millers.

Holter now sees a difference in his colleague.

“His outlook is 180 degrees,” he said. “There’s some relief he knows what it is and he has something treatable. It will take time, but he’s going to get much of his life back.”

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