Life after Lyme

Early last week, during a break between rainstorms, Michael Judson-Carr took a short walk through Bidwell Park. This might not seem a noteworthy achievement, particularly for a gentleman with his poise and bearing—except for the fact that he couldn’t have made even such a brief effort just a couple years prior.

His destination was a sign near Caper Acres, where a dirt path diverges from the paved pathway. The sign advises park-goers of ticks; it’s one of 20 purchased by the Lyme Center, a local nonprofit dedicated to Lyme disease and other tick-borne illnesses, for placement in parks around Chico.

Judson-Carr serves as a board member for the Lyme Center. He’s also a Lyme disease patient—something he discovered in 2015, despite symptoms (including two related co-infections) dating as far back as the 1970s.

The other board members, including acting chair Lisa Sun and secretary-treasurer Sue Slater, also suffer from Lyme disease. Fatigue is a common symptom; so are joint pain, muscle aches, cognitive impairment and fevers. Founded in 2012, the organization “for a number of years was a very small group of very sick people who basically didn’t get very much accomplished,” Judson-Carr said, “except a fundraiser once a year and having some information meetings.

“It’s within the last 18 months that our group has gotten active—proactive—and decided, ‘By God, we’re going to go after it.’”

The warning signs represent a “tangible manifestation” of what the Lyme Center calls its “ambitious agenda” encompassing patient support and community outreach.

The group has two events scheduled this year: Lyme Aid, its annual fundraiser coinciding with Lyme Disease Awareness Month, May 4 (see infobox); and educational seminars for health-care professionals and the public, Oct. 25 at the Enloe Conference Center.

Support group meetings have become monthly standards, regularly drawing two dozen attendees from around the North State, sometimes as far as Sacramento. The Lyme Center also operates a helpline (877-6666); Judson-Carr typically fields the calls and says he’s spoken with people across the country.

As for the signs, they’re predominantly in Upper Park, along with ones in Lower Park, and targeted for Lindo Channel, Teichert Ponds, Annie’s Glen, Lost Park, Verbena Fields, Comanche Creek, Little Chico Creek and Bidwell River Park.

Linda Herman, the city’s parks and natural resource manager, told the CN&R that Bidwell Park already had signage with tick advisories, “but the park is so big that [we] could always use more signs.” The Lyme Center’s signs are larger, as well. The project “furthered our educational efforts that we were already doing,” she added, “so we appreciated the help that they were providing us.”

Erik Gustafson, the city’s director of public works (operations and maintenance), said the city partners with multiple organizations to inform the public about illnesses spread by ticks.

“It’s something to really be vigilant about,” said Gustafson, who oversees the Park Division. “For folks who have contracted Lyme disease, it’s a lifelong condition and difficult condition to manage, so we really want the public to be aware and keep a lookout for ticks when they’re using the park—because they’re there.”

Judson-Carr has no idea when or where he contracted Lyme disease.

“I’ll be honest with you, it doesn’t really matter to me anymore,” he said. “I know I’ve got the disease.”

Now 67, he’s led an active life of hiking and camping, on top of a 25-year career in newspaper journalism in San Diego County followed by business ownership in Palm Springs and event management for the Calgary Stampede, a festival and rodeo in Canada.

“Once you understand that you can be bitten by a tick and show no evidence of being bitten by a tick, and then develop what we call ‘Lyme disease onslaught symptoms’ weeks later, you wouldn’t even possibly connect it,” Judson-Carr said.

“I began to exhibit in my youth these neurological problems that were strange, like partial paralysis,” he said.

Later in adulthood, Judson-Carr became afflicted with fevers, akin to malaria. Those turned out to be linked with a co-infection of Lyme disease, which got diagnosed in Chico.

He left Canada for here three years ago to care for his 98-year-old mother. His primary care provider found his symptoms reminiscent of a different tick-borne infection, Rocky Mountain Spotted Fever. On a hunch, she had him tested for Lyme.

Bingo.

Interestingly, over the next several months, he’d test both positive and negative for Lyme disease. That’s because tests vary in accuracy, and none are perfect. Mitch Hoggard, a pharmacist who works with two of the three Chico practitioners treating Lyme patients, explained that the disease is diagnosed clinically—that is, by deductions based on the person’s condition—rather than testing alone.

Unfortunately for those with undetected Lyme, the bacteria (in the same family as syphilis, which is called “the great imitator”) can mimic other diseases and “affect any organ or system in the body,” Hoggard said, yielding 60 symptoms. Moreover, related bacteria also carried by ticks often get conveyed in the same bite, bringing on aforementioned co-infections.

Some practitioners receive special training through an organization, ILADS, to become “Lyme-literate” health professionals. According to Judson-Carr and Hoggard, local patients seeking physicians certified by the International Lyme and Associated Diseases Society must go to Sacramento or San Francisco.

In Chico, Hoggard coordinates care for Lyme patients of Dr. Hugo Leon and Dr. Kurt Johnson at Mangrove Medical; nurse practitioner Maureen Breese sees Lyme patients at Chico Premiere Primary Care. Judson-Carr continues to receive primary care here but also sees an ILADS-certified specialist in Sacramento.