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Nature writer battles neurological ailments

May 19, 2012
By MIKE LYNCH - Outdoors Writer ( , Lake Placid News

For nearly two years, Bloomingdale writer and naturalist guide Ed Kanze has been battling a mysterious neurological ailment that has caused a tingling feeling in his extremities and a burning sensation in different parts of his body.

The problems started the day after a very strenuous hike on McKenzie Mountain, outside of Saranac Lake, in mid July of 2010. The pace of the hike was much faster than normal for Kanze, who was guiding a few extremely fit clients.

The next day he woke up with a tingling feeling in his feet and legs.

Article Photos

Bloomingdale writer Ed Kanze sits at his desk in his home office.
Mike Lynch/Lake Placid News

"It almost felt like my skin was crawling," the 55-year-old Kanze said.

Since then, that tingling feeling has spread to hands, fingers, eyelids, lips and the tip of his tongue. He also gets burning sensations that can be "quite strong" in his legs, back and sometimes on the top of his head.

"It's tough with something like this ... the symptoms are very hard to ignore," said Kanze, sitting in a chair on his porch near the Saranac River in early May. "I have patchy burning in my legs now. They are tingling like crazy. I almost feel like I could get up out of the chair and dance."

Kanze has been to numerous doctors trying to figure out the cause of the ailments, but has found no answers other than he was told that he may have issues with the sheathing (or protective covering) of some nerves.

Some of the symptoms he has are similar to those that people with debilitating diseases such as multiple sclerosis have. But doctors have told him they don't believe he has a debilitating disease, Kanze said.

He also has been tested for mercury and lead poisoning. Results came up negative for both, he said.

One of his theories is that he has Lyme Disease. Kanze said he found a tick on himself in the spring while leading a guided trip in northern Westchester County that spring. He also found one on himself in June while working in his yard, something he spent a lot of time doing that month and consequently received a lot of insect bites. But he says neither tick was engorged and there was no bulls-eye or rash to indicate that it was a tick with Lyme Disease.

He also didn't and hasn't had any of the other symptoms such as fevers, rashes, vomiting or loss of motor skills. But Lyme Disease symptoms vary from person to person.

After the tingling and burning symptoms persisted, Kanze went to the doctor in mid August. He was tested for Lyme Disease, but came up negative. Because the tests aren't 100 percent accurate, he decided to take antibiotics as a preventative measure. The medicine seemed to have no effect on the symptoms.

About this time, Kanze was talking to his neighbors when he discovered that their adult daughter came down with a mysterious ailment at about the same time he did. Because of the timing and the mystery behind both ailments, it was not something Kanze could ignore.

Lynn Frost, now 51, was working in her parents yard next door to the Kanze's household in June of 2010 when she was she was bit by a bug above her left eye and received a big welt. She described it as the size of a "goose egg."

In the following days she began to feel really ill, especially when she returned to where she lives full-time in Maryland. She was feverish, her palms and the bottom of her feet were itchy and hot and she had swollen knuckles. She recalls almost fainting at least one time.

In addition, she felt tremendous pain in her calves.

"It just hurt to stand - excruciating pain," she said. "I'm an athlete. I'm a ballplayer, but nothing like this before. I couldn't stand."

So on June 25, Frost went to the doctor, the first of multiple visits. She was eventually tested for Lyme Disease but came up negative. Still, her doctor decided to give her antibiotic treatment for Lyme Disease.

At that time, she said she had "no energy."

"I was very lethargic and very tired," she said.

Frost said one of the main symptoms a few weeks after that first doctors visit was that her hands were burning. Whenever she touched anything hot, the pain was excruciating. It was too painful to even do dishes.

"It felt like there was something inside my hands that was trying to get out," she said. "I also had this really, really red rash almost ... from halfway up my finger and my thumb."

The bottom halves of those fingers and thumbs were all red.

In September, she went back to the doctor and her thumbnails had turned black "almost like if you had hit her with a hammer" and she also had an indentation on both thumbnails. Both grew out.

"It was very weird," she said.

She said the doctor wasn't sure what she had.

"They were just treating me for Lyme (Disease),"?she said. "They had no idea. They weren't treating me for any kind of insect bite or anything else."

Unlike Kanze, Frost's symptoms went away. They left by early October, she said.

Because the symptoms disappeared, Frost never tried to find out what caused them. Her friend did some research and guessed that she had a spider bite. That was not a professional opinion, though, and just a guess.

"I've never reacted to bites like that before," Frost said. "It was a pretty good goose egg on my forehead. I never saw anything. I never saw a rash, a tick, nothing."

What does it mean that two neighbors had the onset of mysterious ailments within the same time period? Neither of them really knows the answer to that question.

"All of these things may be red herrings in the story or they may be significant." Kanze said. "That's the thing. No one can really tell. It's really frustrating as the patient in the middle of all this stuff. It seems like every question just leads to more question marks."

For Kanze, a big part of the battle has become the psychological part of it. He feels lucky that the doctors believe that he doesn't have anything life threatening, but it's unnerving waking up every day with mysterious ailments that he said are getting incrementally worse.

In addition to speculating that he could have Lyme Disease, Kanze has considered that maybe it was an insect-borne disease like West Nile Disease. That summer, West Nile was found in higher than usual numbers downstate. The Centers for Disease Control and Prevention reported that 128 people had West Nile Disease in New York in 2010. All but one of those was reported in the New York City or Long Island area.

The next year, there were only 44 cases. The furthest north was Washington County. Neither Essex or Franklin County health departments have had any cases of West Nile Disease reported to them.

Still, Kanze doesn't have many of the West Nile Disease symptoms such as fever, headache or vomiting.

As for Lyme Disease, it is definitely found in the North Country now. In 2009, there were 42 cases reported in Essex County, according to the health department. A year later, there were 23.

In Franklin County, there were 8 cases of Lyme Disease reported in 2010 and 15 a year later.

In Westchester County, where Kanze found a tick on himself in the spring, Lyme Disease is very problematic.

As for Kanze's next step, he said he plans to visit a neurologist in Burlington in July. He's hopeful the doctor can shed some light on this mystery.

"If there's anything I could do just to understand it more, that would give me much more peace of mind," Kanze said, "and certainly anything to make it go away would be very exciting."



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