by Dennis Dalman
Tiny ticks have caused big miseries for Jakin and Nicole Koll of Sartell.
Both are suffering from Lyme disease, which is caused by infected deer ticks, so tiny they are slightly smaller than the head of a pin. The ticks, if they are on the skin long enough, bite their hosts and then “drink” their blood. If the tick contains the bacteria that causes Lyme disease, the host will likely catch it.
The Kolls are on a mission to share their story and others’ stories about what ongoing misery a tiny biting tick can cause. They hope by educating others, more can be active in informing others.
The Kolls also recently started a Lyme Disease Support Group and are hoping others will be spurred to help them form and sustain such a group.
Kolls’ chronic disease
In most cases, Lyme disease, if caught early enough, can be cured by a regimen of antibiotics over a period of two or three weeks. However, the Kolls were not so lucky. Nicole, for example, has had Lyme disease for six years. Jakin has had the disease for several years. Neither of the Kolls is positive exactly how long they’ve had Lyme disease because neither remembers being bit by a tick, and neither developed the well known “bulls-eye” rash – a reddish ring around the bitten area.
What most frustrates the Kolls, besides the miserable symptoms they suffer, is the fact they, like others in their predicament, are at the very center of a raging controversy. Many doctors and some researchers do not believe Lyme disease can develop into such a chronic condition. Most doctors will not prolong antibiotic treatment beyond a month or so.
“It’s a big controversy,” Nicole said. “They are always debating the issue. Too many doctors view people like us as some kind of hypochondriacs. We are not.”
Nicole spent nearly three years in a constant search for a doctor who had enough faith in the existence of chronic Lyme disease to treat her and her husband. It was a wild-goose chase that had the couple feeling utterly helpless. At long last, Nicole managed to find a doctor who agreed to give her ongoing treatments. Part of her regimen includes taking two different kinds of antibiotic pills each day, along with a drug for rheumatoid arthritis. She also takes probiotics to build up her immune system.
“The medication helps tremendously,” she said. “I haven’t felt like a whole person in years, and now I’m beginning to. No one knows how bad Lyme disease can be until they get it.”
The St. Cloud doctor who treats Nicole sees up to 15-20 patients at a time, and genuine camaraderie has developed among them based on empathy of what all have suffered.
Nicole’s Lyme disease symptoms have included, off and on and not all at once, the following: a skin rash (but not the bulls-eye kind), flaking skin, stuttering, depression for no known reason whatsoever, trouble with concentration, difficulty in reading and with daily tasks, extreme fatigue, muscle aches and lack of energy. At one time, she also developed a balance problem that would cause her to walk toward her left, to the point she would actually walk into a wall.
She went through so many tests she couldn’t begin to count them, including tests for allergies and even tests for attention-deficit disorder.
Through all the pain and frustration, Koll managed to keep a job at Resource Training and Solutions. She also managed to attend the Minnesota School of Business and to graduate with a bachelor’s degree in business administration. She now works part-time for the St. Cloud Technical and Community College, where she helps organize customized health-training teams for businesses in the area. She feels fortunate she can work only part-time because that gives her the time to take care of her two boys and her husband. Her two boys are Kaden, 7; and Conor, 5.
Husband Jakin has suffered symptoms of constant chronic headaches and joint pain so severe it virtually cripples him at times. The doctor has been giving Jakin a series of tests on his immunity system. Once those tests are completed, soon, Jakin can begin a long-range treatment similar to his wife’s. Jakin is a meteorologist for MnDOT. He helps install computer screens in MnDOT vehicles throughout the state and then coordinates weather reports on those screens for the drivers – typically plow drivers – and their supervisors.
The Kolls are hoping and praying the long-term treatments will finally keep the disease at bay, if not totally eradicate it from their bodies. Nicole estimates they have spent perhaps as much as $100,000 on medications throughout the years. They have also visited doctors, clinics and hospitals far and wide – Brooklyn Park, the University of Minnesota, Plymouth, Sartell, St. Cloud and many others. Jakin was even referred to an orthodontist because a general doctor thought he might be suffering from grinding-teeth syndrome, thus causing his relenteless headaches. He also consulted with neurologists and allergists, in addition to doing occupational and physical therapies. Even botox nerve injections were tried. Nothing really worked. His suffering continued.
What most people do not know, Nicole said, is Lyme disease can lay dormant in the body for years before it erupts again – something that obviously happened to her and her husband.
“A lot of people have it and don’t even know it,” she said. “Many are being treated for something else, something else they don’t even have. Lyme disease is caused by a little spiral-shaped bacteria, and it can affect everything in your body, including the musculo-skeletal system. Some people become very crippled by it.
Lyme disease is extremely expensive because most insurance companies won’t cover treatments after the first initial weeks of treatment with antibiotics, so people have to pay for services out of their own pockets, Nicole said.
The Kolls often see weedy, grassy, wooded areas as battlefields where tiny enemies lie lurking.
“We are constantly looking for ticks,” Nicole said. “We always use sprays, and we wear clothing that includes long-sleeved shirts. And we always inspect our bodies after being outdoors.”
Koll wants people to know that no safeguard is 100-percent certain. That is why, she said, people should wear light-colored clothing and pants should be tucked into boots, preferably. A tick lotion or tick spray should also be used diligently. If a family has dogs, they should be thoroughly checked once they’re back in the house as ticks can move from a dog to humans, especially children who tend to play up-close physically with pets.
Families should do a ritual tick search of bodies as soon as they come in from outdoors, and the entire body, including the hair, should be searched for the tiny ticks.
If a tick is found, always put it in a plastic baggy, seal the bag and keep it in a safe place. And then, if any family member comes down with a rash or flu-like symptoms, that person should see a doctor immediately, and the tick in the baggy should be brought along. Nicole said it’s important to remember not everyone infected with Lyme disease will have a bulls-eye rash, although some other more generalized rashes can be noticed in many cases.
The earlier people see a doctor, the better, Nicole advises.
For all of the above reasons – suffering, frustration, expense, lack of understanding – the Kolls are determined to help educate others about the disease and to form a local support group so sufferers of the disease have somewhere to turn in a world that often seems disbelieving or downright skeptical of chronic Lyme-disease victims.