When Cris Johnson awoke one morning to find that he had lost the ability to whistle, he knew he had a problem. The musician and singer discovered he had developed Bell’s Palsy, which causes paralysis of the face, but it would still be quite some time before doctors realized it was caused by Lyme disease.
“It was the first symptom I had that I knew something was definitely wrong,” he said.
Although Bell’s Palsy is now known to be a classic symptom of Lyme disease, it also has other causes that doctors investigate. And so Johnson spent eight months in the throes of what he calls the “most insidious part” of the disease: Finding a diagnosis.
“It’s probably one of the most misdiagnosed diseases we have,” he said.
It was his fourth Western blot test, in 2008, that showed positive for Lyme, and by then, he had permanent damage to his cranial and lumbar nerves, he said. The powerful intravenous antibiotics doctors administered helped knock the disease down, but it took Johnson three years to get back to “some sense of normalcy.”
And he makes a point to note that you’re never fully “cured” once you’ve had the disease. For him, his right leg and face are affected and his ability to think clearly is sometimes compromised.
“If you contract Lyme and it goes untreated, you never get over it,” he said. “You have to learn to adapt and adjust to what you’re left with afterwards.”
Lyme disease is caused by a bacterium transmitted through the bite of an infected deer tick ”“ a pest that’s common in Maine. If caught early on, the disease can be successfully treated with antibiotics, but when Lyme disease goes misdiagnosed or undiagnosed, it can lead to late-stage symptoms such as arthritis and partial facial paralysis.
The message: Practice prevention, but if you do find you’ve been bitten by a deer tick, remove it immediately and get antibiotic treatment as soon as possible.
Conservatively, an average of 50 percent of Maine deer ticks carry disease, according to Susan Elias, a clinical research associate at Maine Medical Center’s Vector-borne Disease Laboratory in South Portland, but in some areas, the infection rate is as high as 80 percent. The rates are higher in the southern part of the state, so Elias recommends that anyone who’s been bitten should assume the tick was infected.
“People don’t recognize these little guys are everywhere,” said Johnson, and he’s even heard people say that Lyme disease isn’t a problem in Maine.
In fact, there were 981 confirmed and probable cases of Lyme disease in Maine in 2011, according to the Maine Centers for Disease Control, and of those only 49 percent of patients reported the “bull’s-eye” rash with which the disease is associated.
So far this year, 180 cases of Lyme have been reported, according to state epidemiologist Dr. Stephen Sears, and the numbers for other tickborne illnesses ”“ which can mimic malaria ”“ are also on the rise.
To avoid exposure to deer ticks, the CDC recommends that people stay on cleared trails, use insect repellent and tuck pant legs into socks to keep ticks on the outside of clothing. Those who frequent the outdoors are urged to check themselves when they come back inside, and heat-dry their laundry. If an attached tick is found, it should be removed by grabbing it close to the mouth with tweezers and pulling it straight out.
“People go out all the time and don’t even check for ticks. For me, it’s a matter of routine,” said Johnson, who lives in Old Orchard Beach. As part of his efforts to spread the word about Lyme disease, he’s undertaken a tongue-in-cheek campaign, “LymeSexy.” The idea: Set aside a little time each night to check out your partner for ticks before bed ”“ it just might be an enjoyable experience. His other advice is to keep pets out of the bed.
Johnson, who often hands out “LymeSexy” awareness bracelets, is joined in his Lyme disease advocacy by many others in the state, including Angela Coulombe of Saco, founder of the lymebuddies.com website.
“Prevention is key,” said Coulombe. “Look out for it and keep it on your radar.”
Coulombe, who is a website designer, mother and an avid runner, began to experience symptoms in August 2007 after completing the Beach to Beacon race. Her leg began to swell up and would not heal despite physical therapy. By September, the pain in her leg was “excruciating,” her joints had begun to ache and she was experiencing nausea, chronic fatigue and bad headaches, she said.
“I just felt terrible all the time,” she said.
Scans of her leg showed no damage, and despair set in until October, when she got the bull’s-eye rash.
“Luckily, my mother was there,” she said. “She said, ”˜I think you have Lyme disease,’ and suddenly it all clicked,” said Coulombe.
But what she thought would be a quick fix after a three-week antibiotic treatment ended with her being unable to turn her head, lift her arms over her head or pick up even lightweight objects. Her doctor refused her more antibiotics, attributing it to just “aches and pains” of getting older ”“ a brush-off that was offensive to this young, active mother.
“I would lay on the couch thinking, who’s going to help me? I can’t live my life if I don’t get better,” she recalled.
It took her a month to find a doctor who would continue the antibiotics ”“ long-term antibiotic treatment for Lyme Disease is a point of controversy in the medical community ”“ and her journey back to wellness continues.
Before she contracted Lyme disease, Coulombe said she ran a seven-minute mile. When she first tried to get back into running in 2009, it took her an emotionally devastating 45 minutes. With perseverance, however, she was ready to run again by 2010, completing the New York City Marathon in four hours and 12 minutes.
Through the lengthy healing process, which included an immune-system-boosting diet, and working through the disease to rebuild her endurance, it was a fellow Lyme disease sufferer, Amie Levasseur, who she leaned on, said Coulombe.
“Just being able to talk to somebody who understood helped me get through it,” she said. The two decided that “no one should go through it alone,” so they founded lymebuddies.com and now take part in benefit runs and help organize advocacy events.
“I want to eradicate the mistake I made by not knowing anything about this disease,” she said. “It’s almost like not knowing you live on top of a fault line.
“If you start to have any symptoms, think about Lyme. Don’t let it go on for months. Go see a doctor.”
LymeBuddies will host a LymeAid concert Sunday, Sept. 16 at Thompson’s Orchards in New Gloucester. Funds go toward printing of material to spread information about Lyme disease. Visit lymebuddies.com and lymediseaseassociation.org for more information.
— The Bangor Daily News contributed to this report. Kristen Schulze Muszynski can be contacted at 282-1535, Ext. 322 or kristenm@journaltribune.com.
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