UI student recovers from Lyme disease

BY ALLIE WRIGHT | MAY 12, 2011 7:20 AM

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Matthew Tolan didn't think a minuscule tick bite would force him to miss a year at the University of Iowa.

He didn't think he would gain 100 pounds in a single year. And he didn't know he would be too sick to participate in RAGBRAI, missing the bike ride for the first time in six years.

After nearly two years of misdiagnoses and frustration, Tolan was diagnosed with Lyme disease in the spring of 2010. This conclusion confirmed his family's suspicions that the bug bite he received on a June 2008 trip to the Boundary Waters in Minnesota was at the root of his problems.

Lyme disease has forced the 19-year-old outdoorsman from Waverly, Iowa, to take a year off from his studies at the UI. And more than seven months into his medical leave, Tolan is finally making a slow recovery.

Sitting in an Iowa City coffee shop this past winter, Tolan, a civil-engineering and German major, appeared to struggle to communicate — a side effect of the disease's impact on the brain.

"A huge [sacrifice] was leaving the University of Iowa for a year," he said, visibly trying to stay on track with his thoughts. "My doctor thought that, and we agreed with him, that we should, I should, take a year off to," he paused, "get back into things because," he paused again. "Now you can see I like stop and pause. Stop and pause."

The day after his trip to Minnesota, the then-high- school senior returned to Iowa and showed his parents an extremely swollen lymph node on the right side of his neck.

A biopsy of the lump came back negative.

"At first, we were concerned it was cancer of some sort, lymphoma or leukemia," said his mother, Connie Tolan. "So we were relieved when it came back not cancer."

But Matthew Tolan's symptoms increased, and he experienced extreme fatigue. Doctors assured the Tolans the infection would clear up in a few weeks.

Doctors at the Mayo Clinic in Rochester, Minn., first tested him for Lyme disease in October 2008. The test came back inconclusive.

Daniel Cameron, a doctor who specializes in internal medicine and the former president of the <a href= "http:bit.ly/1acMJC">International Lyme and Associated Disease Society</a>, said a patient's immune system might not immediately recognize the disease, leading initial tests — which look for antibodies rather than the disease itself — to come back as false negatives.

The Centers for Disease Control and Prevention requires hospitals to use two forms of tests, but doesn't require doctors to repeat tests if they come back inconclusive.

"If you wait three or four weeks, you're more likely to get a positive test," Cameron said. "But by that time, if you're waiting, it becomes much more difficult to treat."

Without a correct diagnosis, Tolan's health continued to deteriorate.

In his freshman year at the UI, he began gaining weight at a startling rate. Before his illness, Tolan, who stands 6-2, weighed about 260 pounds. At the end of the school year, he weighed 360 pounds. He also began suffering severe fevers and chest pain. And around the same time, his brain function began to slow.

Throughout the ordeal, Tolan said, he and his parents asked physicians to test him again for Lyme disease. They said UI Hospital and Clinics doctors refused, pointing to the negative test from Mayo Clinic and his lack of conventional symptoms, like the commonly seen "bulls-eye" rash.

"Just because you get a negative doesn't mean you stop pursuing that," Connie Tolan said. "At Iowa City, I kept insisting they test for Lyme disease. [I asked] 'Could you just run a test?' 'Could you just prove me wrong?' "

During spring break 2010, Matthew Tolan still saw no improvement. He returned to Waverly and visited a local doctor, this time testing positive for Rocky Mountain spotted fever, another tick-borne illness.

"That's where we really got on the right track with the testing," Connie said.

Shortly after, the Tolans decided to go to a Chicago doctor connected with the International Lyme and Associated Disease Society to seek another Lyme disease test. It came back positive.

He started receiving intravenous treatments in Chicago twice a week, and he has steadily improved ever since.

Sitting on his living room couch this spring with his dog, his progress was visible. He didn't stammer and seemed to have a better memory.

"Overall, we're at the halfway marker," Tolan said, and he is now only receiving treatments in Chicago once every two weeks. He is on antibiotics and other medication for the health of his thyroid and for his adrenal system — he said he still struggles with lack of energy, but now weighs slightly more than 300 pounds. He said he hopes to return to his normal weight of 260 pounds when he is fully recovered.

While Tolan anticipates being cured of Lyme disease by the end of the summer, he will not return to the UI, he said. He plans to transfer to Arizona State University.

Tolan said he hopes to move to the Southwest, not only to continue is education but to benefit his health — the heat will help suppress his disease.

"It will be a better environment to live in," he said Wednesday.

The next step will be using Tolan's fight to increase awareness of the disease, his father, Justin Tolan, said.

"You could take something like this and just get angered, but he's channeling that into wanting to advocate for knowledge about Lyme disease and getting the story out because there so much wrong information out there," Justin Tolan said. "He's sticking with it and fighting the good fight. He's gonna beat it."

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