MILWAUKEE -- Nathan Braatz of Sheboygan, Wis., may be living the extremes of Lyme disease.
Experts disagree on whether a chronic form even exists, or whether lingering symptoms like those Braatz experiences should be classified as post-infectious complications.
Either way, the 38-year-old man lives in the dark with his curtains drawn at all times. He wears light-canceling goggles over a scarf and gauze pads on his eyes before stepping outside because exposure to bright light causes seizures.
"It literally shuts my brain down within seconds," he said.
He also suffers from chronic fatigue, severe body aches and migraines that cause him to temporarily lose speech function. He's on oxygen, requires the aid of a home health care worker, and hasn't been able to work in about five years.
"I'm literally tortured by this disease every day," Braatz said. "My goal by sharing my story is to get information out to the public because I don't want anybody else suffering like I am."
Toward that end, Braatz uses a video diary to document his illness, warn others about Lyme disease and remind them to check for ticks. The videos are posted under the YouTube channel, goodmanatheart. Braatz also invites people to contact him about Lyme disease.
Braatz said he began having severe chest spasms and neurological symptoms of Lyme disease about six months after he was bitten by ticks at an uncle's home in Green Lake in late August, six years ago.
His uncle lives in a wooded area with a pond in the backyard, and has three dogs that Braatz recalls slept in the guest bedroom with him during his four-day visit. Braatz didn't find ticks embedded in his calf muscle, just holes that were perfectly round.
The symptoms surfaced after his immune system battled the flu and then a chest cold, he said.
Blood tests repeatedly came back negative for Lyme disease, and Braatz was tested by multiple doctors for multiple other illnesses and diseases. Those tests also came back negative.
Three years ago, he saw another doctor who clinically diagnosed Lyme disease and gave him oral antibiotics off and on for the next two years. However, he didn't have a blood test for Lyme come back positive until about two months ago, Braatz said. He is now debating whether to get an extremely risky antibiotic treatment.
Lyme typically disappears in most cases that are treated early with antibiotics. But in a small number of people, common symptoms like muscle and joint pain or memory problems persist.
"We know there's something going on; we just don't know what it is," said Diep (Zip) Hoang Johnson, a vector-borne epidemiologist in the division of public health at the state Department of Health Services. "We don't have a way yet to prove what it is."
For now, the medical establishment refers to what Braatz suffers as post-treatment Lyme disease syndrome. The debate continues over whether ongoing symptoms reflect continuing infection, or post-infectious complications.
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