Knocked for a loop, he's fighting back

Knocked for a loop, he's fighting back

MONTICELLO — In the summer of 2001, Chris Corrie took his oldest son on a week-long fishing trip to central Canada.

Each day, they hopped into their rental boat, followed some friends who had gone up with them to a new location on beautiful Lake of the Woods and fished for walleye.

One afternoon, they docked on a tiny island with a hunting cabin and got out to stretch their legs. Then they headed back to camp, where Corrie lay down to take a nap.

It was then that he felt a sting on his chest. When he looked down, he saw a tick no bigger than a pinhead.

"I wondered if it was one of those weird Lyme disease ticks," the Monticello man recalled. "I picked it off and killed it and didn't think anything more about it."

That is, until he started getting sick.

A few months later, Corrie — who runs Corrie Art Glass with his wife, Lynn, and at the time served as a Ward 4 alderman — started experiencing a tingling sensation on the top of his legs. Then he came down with influenza-like symptoms.

His doctor told him the tingling was likely caused from wearing jeans that were too tight — something Corrie didn't wear or even own. And the fatigue, chills and body ache? Well, the doctor determined, he had the flu.

When the symptoms got worse, Corrie went back to the doctor and was tested for mononucleosis. When the test came back negative, the doctor attributed the illness to a flu bug that was going around. He would just have to ride it out.

But the symptoms didn't go away. The fatigue became so severe that Corrie, who had always been healthy, had a hard time getting out of bed, even lifting his head. Meanwhile, he was tested again for mono, diagnosed with chronic fatigue syndrome and diagnosed again with the flu.

That's when the local pharmacist, one of his best friends, offered another possibility: "Corrie, this sounds an awful lot like a tick-borne illness called Lyme disease."

In spring 2002, Corrie was diagnosed with the disease. Last November, he made the difficult decision to step down in the middle of his second term as his city's mayor due to ongoing struggles with it.

Now he's sharing his experience to bring more attention to Lyme, which he called "a very misunderstood disease."

Lyme disease is a bacterial illness caused by the Borrelia burgdorferi bacterium that's transmitted by the bite of an infected black-legged tick, commonly called the deer tick.

The deer tick has been officially established in Champaign, Vermilion, Coles, Piatt, DeWitt and McLean counties, and is present and may be established in Douglas County, according to the most recent information available from the state.

If treated with appropriate antibiotics in the early stages, patients usually recover rapidly and completely. However, untreated Lyme disease can develop into symptoms of arthritis, heart palpitations, dizziness, shortness of breath, inflammation of the brain and spinal cord, nerve pain, memory problems and pain in the muscles, tendons, joints and bones.

"It's a very complex and serious illness," said Dr. Elizabeth Maloney, a Lyme disease educator from Minnesota.

Maloney said there are still a lot of unknowns surrounding the disease, which makes it difficult to diagnose and treat. And many patients appear healthy but struggle with sometimes disabling symptoms, which take a physical, emotional, psychological and economic toll on their lives.

"There's an oversimplification of the disease," she said. "Painting it black and white is so much easier, but in doing that, we've harmed so many patients."

In the U.S., about 300,000 people are diagnosed with Lyme disease each year, according to the Centers for Disease Control and Prevention. The highest concentrations are in the Northeast and upper Midwest.

"But they're guesstimating," said Maloney, who believes sufferers are misdiagnosed so their cases are going unreported.

"We also don't know what the incidence is: How many people have it at any given moment? Conservative estimates are 20 percent of Lyme patients develop long-standing diseases. If that's true ... you pick up 60,000 who develop chronic Lyme disease each year. You can see it ratchets itself up quite a bit."

Many Lyme patients don't remember getting bitten by a tick. Some don't remember seeing the circular red rash that sometimes accompanies the flu-like symptoms in the early stages.

And "about 30 percent of cases have no report of any rash," Maloney said. "So if physicians are willing to diagnose only when there's a rash, they're missing about 30 percent of cases."

Lyme is difficult to diagnose partly because it mimics other disorders, such as arthritis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, ALS and Alzheimer's disease, Maloney said.

She also pointed out the most common diagnostic tests aren't reliable when it comes to detecting Lyme.

"So, if a doctor is relying on lab work alone ... they're going to miss a substantial number of cases, especially if the patient has neurologic Lyme," Maloney said.

"If it's treated early, it's very curable," she said. If not, "the potential for disability is very great. ... The bacteria is deposited in your skin. If it gets a chance to get into your bloodstream and disseminate, there's a potential for it to land anywhere — in your joints, your heart, your brain — and cause all sorts of problems."

While Corrie recalls the tick bite, he never noticed any type of rash. When his local doctor tested him for Lyme, the test came back negative.

"They gave me the old-fashioned Lyme titer, which looks for antibodies in your body that are currently fighting an organism. There weren't any," Corrie said.

The doctor admitted he didn't know much about the disease beyond what he had learned at a recent conference and suggested Corrie look for someone who did. Corrie began searching the Internet for specialists.

"Let me tell you, there aren't too many," he said, recalling he found a few on the East Coast. He said the Mayo Clinic and Barnes-Jewish Hospital had researchers, but no one who directly treated patients.

Then he found Dr. Charles Crist, of Columbia, Mo., a family practice physician who has diagnosed and treated more than 10,000 patients with Lyme disease since 1988.

Corrie said he took the Western blot test, which looks for DNA signatures of specific organisms in the bloodstream.

"It came back positive," said Corrie, who was relieved finally to identify his illness and, with Crist, develop a strategy to deal with it. "The biggest confirmation was I responded to the antibiotics."

However, the antibiotics didn't cure Corrie's disease, which had developed into chronic Lyme. In chronic cases, symptoms can linger for years and when they flare up, they can be worse than they were the first time.

Corrie has suffered from bone-numbing fatigue, headaches, backaches, neurological problems, numbness, sharp pain and "brain fog."

"You just can't quite remember things," he said.

He has taken 14 to 15 different antibiotics to treat the symptoms — one at a time for 30 to 60 days — and has managed to go as long as a year off of any medication without having a recurrence. But he said his symptoms are cyclical.

"I get hit very hard this time of the year," Corrie said referring to the beginning of the year, "and late summer and early fall." In between those times, he's experienced "mini-hits" that will last two weeks or so.

About once a year, Corrie sees Crist, who notes which medications work and don't work. The specialist has also suggested alternative options, including hyperbaric pressure chamber and sauna treatments, scuba diving and taking colloidal silver — none of which Corrie has tried yet.

"He's willing to throw out anything that's come up at one of the conferences he's attended — and he's attended conferences all over the world — or that he's found effective," Corrie said. "He's committed to getting his patients over the disease."

Yet when Corrie met with a new doctor back home who claimed to know "absolutely everything" about Lyme disease, he encountered what many other chronic sufferers have — doubt.

"When I told him I'd had it for years, he stopped and said, 'Well, you don't have Lyme disease.' They say what you're experiencing is more of a mental thing, and that's definitely not true," said Corrie, who has been referred to a psychiatrist after complaining about recurring symptoms. "Traditional medicine is so perplexed by this or distracted by other issues ... so they just throw you into that category of Post-Treatment Lyme Disease Syndrome.

"You're over it, but you're really not," continued Corrie, who said some patients get labeled as hypochondriacs. He wants a better understanding of the disease by both the public and medical professionals, more medical research and more help for patients, including health insurance coverage for treatment.

Maloney said the general consensus of the medical establishment is once you're treated for Lyme, additional treatments won't help. As a result, most insurance companies won't pay for further treatment.

But, she pointed out, there were two prospective randomized placebo controlled trial of antibiotic retreatment that demonstrated that retreatment was beneficial for patients with severe fatigue. (One was by Krupp and the other by Fallon.)

"That's one of the things I try to show doctors, "Here are the studies. Let's look at them," said Maloney, who also believes there needs to be more research to better understand Lyme and help patients.

The lack of insurance coverage has bankrupted some patients, said Kimberly Frank, who runs The Lyme Support Network in Ingleside. Frank — who has been living with Lyme for 20 years, and has suffered, among other things, paralysis and migraines and lost her sight, hearing and hair temporarily — said she needed years' worth of medication, but her insurance company would only cover the cost of a three-week course of antibiotics.

"We had to pay for everything out-of-pocket, which ended up ruining us financially," Frank said, adding she lost two successful bridal businesses and depleted her savings.

The network provides information and support to its more than 400 members. The group holds an annual walk, which has raised more than $20,000 to bring Maloney in to educate local doctors, nurses, psychiatrists and others in the medical field.

It's also pushing for state and federal legislation that would fund more research, protect doctors who treat with longer courses of antibiotics and guarantee insurance coverage.

When Corrie and his wife, both artists, moved into their historic home in Monticello and opened their stained-glass studio in a two-story carriage house on the property in 1984, he never dreamed he would get involved in local government.

But when he did — as an alderman in 2005 and mayor in 2009 — he discovered he enjoyed being part of the process of moving his community forward, helping its citizens and projecting a good political image for the city.

He feels good about the things outgoing City Administrator Floyd Allsop and the city council accomplished during his tenure, including putting the aquatic center on the ballot, building a new water tower and a couple of bike paths and addressing serious flooding damage.

But the part-time, $500-a-month job, which required him to run council meetings, sign checks and keep on top of city issues, could be stressful at times.

"There's always a group of people, and usually it's very small, that don't like you and don't like the way the city is run," he said. "They're suspicious or paranoid about what's going on and it makes it very difficult to conduct normal business."

During a doctor's visit, Crist told him he needed to get rid of the undue stress in his life.

The idea of resigning from office didn't sit well at first. Corrie wasn't raised to be a quitter; he wanted to finish what he started. And each time he started to think about resigning to focus on his health, he would start to feel better.

"Then I'd start to feel worse," said Corrie, who also struggled with high blood pressure.

He remembers family and friends, though always supportive, were relieved when he finally stepped down on Nov. 9. Larry Stoner, a Ward 1 alderman, was appointed to take over as mayor.

Corrie has no regrets. The change has already made a significant difference on his health and quality of life.

He and his wife continue to run their business, which he said is enjoyable work and never stressful. He also makes time to visit with seniors over a card game at the local senior living center or over coffee at one of the fast-food restaurants. Just hold the Big Mac.

Corrie, who is now intolerant to gluten and corn, has to watch his diet. He also wants to get back into exercising, which he believes will only improve his health.

He and his wife, who have two grown sons, are looking forward to the arrival of their first grandchild in August. Corrie also sees himself taking on more of an advocacy role with Lyme disease.

"I definitely want to advocate both legislation and awareness," said Corrie, who used to be involved in a Lyme disease support group in central Illinois before he got busy with local government.

"I still like being part of the solution and the process. So maybe I'll find another process to get involved in like Lyme awareness."

The numbers

Reported cases of Lyme disease in Illinois, according to the Centers for Disease Control and Prevention:

2014: 233

2013: 337

2012: 204

2011: 194

2010: 135

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bettyg wrote on January 17, 2016 at 7:01 pm

noelle,

thank you for the good article on corrie's  lyme disease symptoms, treatments, working with ILADS, intl. lyme and associated disease society, lyme literate drs. who treat longer than 30 days of antibiotics, supplements, and/or alternative therapies.

glad the local support group leader had comments too about our treatments being called "EXPERIMENTAL THERAPY";  thus our insurance companies will NOT pay anything towards them and most lyme literate drs. appts.

insurance companies go by CDC, center for disease control, who goes by IDSA, infectious disease society of america, who wrote the lyme treatment guidelines WITHOUT involving our ILADS drs. input into the writing and implementation of those guidelines.

i was bitten 47 yrs. ago last christmas season.   i never knew it!   never saw an embedded tick with blood, NO bulls-eye rash or strange rash at all.    

i just got terribly sick going to the dr. for my 1st wrong misdiagnosis of mononucleosis!   that began 35 YRS. MISDIAGNOSED by 40-50 drs.  UNACCEPTABLE!

using my daily journal,  i tracked back where and what i was doing when i got terribly sick and dr. confined me to 2 wks. bed res

​i eliminated all the NORMAL ways of being bitten since it was below zero weather;  i had NO pets so couldn't get the tick bite from them, etc.

i determined the tick came off my folks CUT christmas tree!  since then met entire families bitten the same way i was 47 yrs. ago.

my husband passed away 14 months ago.   i had donated his body to des moines, iowa osteopathic college for study by medical students wanting to be drs.

they had preserved his brain in formaldehyde; so 3 months ago i was able to have his entire brain sent to paula pierce, norman, okla. who has a small private lab for blood staining.

then her blood slides were sent to dr. alan macdonald, patholigist, florida, who worked with them under his microscope performing DNA probe slides coming up with WORLDWIDE HISTORY MAKING NEWS!

jack had 2 diseases NEVER seen on brain autopsies before worldwide:

BORRELIA/lyme disease and LEWY BODY DEMENTIA, like actor/comedian robin williams had causing VIOLENT hallucinations.

a scientific medical journal article is currently being written to be sent and published SOON in several journals. i will be shown as 1st CO-AUTHOR over 3 medical people involved mentioned below plus tom grier, minn.

since then,  alan has had a 2nd case with the same diagnosis as my late husband, jack!   it will be published after jack's publication article.

i just learned that a few publish FREE; another one charges $2,000/ARTICLE to publish!   no wonder we don't hear the latest news....many can NOT afford to pay $2,000 per article per journal to be published!    

SHAME on the medical journals for preventing more articles from being published in a TIMELY manner by CHARGING for info that should be made available FREE in my humble opinion.

bettyg, iowa activist

Borrelia/lyme disease, lewy body dementia, parkinson's, alzheimer's/dementia, diabetes, cancer, and the list goes on and on!