Man diagnosis self with mystery illness called ``the great imitator''
Dan Roberts had grown used to feeling miserable and frustrated. He had a disease without a name and without a name he couldn't treat the disease.
At various times over the last 30 years, Dan has lived with irritable bowel syndrome, arthritis, facial numbness, joint pain, neck pain, fatigue and ``brain fog,'' a condition in which he mentally wasn't in the moment.
From age 10 to age 40, he was misdiagnosed by doctors confounded by symptoms that mimic Lou Gehrig's Disease, Multiple Sclerosis, Parkinson's, chronic fatigue, fibromyalgia and Attention Deficit Disorder. In fact, his disease has been called ``the great imitator.''
Doctors dismissed the early signs--fever, rash, headaches and fatigue--as the flu. Over the years, Dan was evaluated by more than 10 specialists. They told him his arthritis was caused by athletics, his irritable bowel by an inability to handle stress and his anxiety by his ``high strung nature.''
The disease interrupted life. One year, Dan missed 42 days of school with irritable bowel. When he had his tonsils removed, it took 11 days to recover. And, he was forced to stop hunting when he had surgery on his arthritic knee at age 30.
In 1998, Dan suffered what he thought was a heart attack. ``It felt like someone punched me in the back. I lost my breath and had a sharp pain in my chest.'' He was rushed from work to the hospital but his EKG was normal. There was no explanation for the incident.
Dan was admitted again a short time later to have kidney stones removed. If he had known better, he would have recognized a clue from this hospital stay because, for a short period, Dan felt the best he had ever felt. Unfortunately, the good health was short lived.
In 1999, the attacks on his body began again--neck pain, sweats and migraine headaches. Irritable bowel syndrome put him in a fetal position. And, Bell's Palsy numbed his face.
He lost 33 pounds, going from 183 to 150. Again he went to see a cadre of specialists including a neurologist and a psychiatrist.
The bottom came on the day his new boss from New Jersey came to meet Dan and his fellow supervisors at Sun Chemical in Maumee.
While at work, Dan's body started cramping and he went into shock. In eight years he had struggled through pain and discomfort without missing a day of work due to illness, but on this day he was rushed to the hospital once again.
This time the ``brain fog'' was so dense Dan couldn't remember his name to tell the nurse. He spent nearly three hours hooked up to an antibiotic drip while doctors scanned for Lupus and Lou Gehrig's disease.
As bad as he felt going into the hospital, he was simply mystified when he was released clear-headed and pain-free.
Dan knew his co-workers would think he was faking it, just like his classmates accused him of faking it when he missed school.
The embarrassment, the pain and the weight of bearing an illness with no name finally drove Dan to the internet.
``I honestly believed there was no one on this earth who could find out what was wrong with me, but me,'' he said. He typed in his symptoms--facial numbness, arthritis, irritable bowel. Within seconds his disease had a name--Lyme's Disease.
Dan clicked on a picture of the rash and was stunned by what he saw. It was the same distinctive rash he first saw at age 10 while in Washington D.C on a class field trip. He recalls being so self-conscious about the rash that he wore a t-shirt to swim at the hotel so he wouldn't embarrass himself in front of a girl he liked.
As Dan researched Lyme's Disease, two other thoughts occurred to him. First, he remembered finding a tick in his bedding shortly after he moved to Walbridge in 1999. He thinks he picked up this second tick while mowing the lawn.
Secondly, he remembers how healthy he felt after leaving the hospital after having his kidney stones removed and then after this last release. He now knew the antibiotics subdued the bacteria growing in him.
Unfortunately for Dan, while he now had a name for his illness, he had been infected with Lyme bacteria for 30 years. In this chronic stage, he may continue to have pain in his joints and nerve damage despite treatment.
However, as of today, Dan is into his third round of antibiotic treatments, his joints don't ache and he is free from irritable bowel.
While Dan attributes all his symptoms to Lyme's, his doctor does not. In a report Dan shared with me, his doctor writes that Xanax, an anti-anxiety drug, may be more responsible for quieting Dan's ``hyper strung nature and inability to sleep'' as well as his irritable bowel.
Dan contends the anxiety was due to the uncertainty he felt because he couldn't name let alone treat his illness. Now that he can, he's more relaxed.
``I've never known in my life what it was like not to live with that syndrome. If it's better living through chemistry because I have a demon in my body, so be it...I'm just glad I found out what was wrong with me,'' he explained.
As new housing developments encroach on wildlife habitat, Lyme's cases have skyrocketed. It is estimated more than 200,000 new cases of Lyme's Disease are diagnosed each year in the United States. It is most prevalent in the Atlantic states, but rare in Ohio and Michigan.
Dan believes a lack of public awareness skews those numbers. He was pleased to see Governor Robert Taft recently issue a resolution declaring May Lyme's Disease Awareness Month. The resolution states that since 1984, more than 1,000 cases from 83 of 88 counties have been reported to the Centers for Disease Control. And, from May through July is the most likely period to be bitten by an infected tick.
The first sign of infection is usually a circular rash that can reach up to 12 inches in diameter and features a clear area in the center, a bull's-eye. The rash occurs in about 75 percent of infected persons and appears three to 30 days after the bite, according to the Centers for Disease Control.
Not all ticks carry Lyme's. The black-legged, or deer tick does, the wood tick or dog tick does not. Animals that most often carry the deer tick are deer, white-footed field mice, opossums, chipmunks, squirrels and horses.
If you think you may have Lyme's ask your doctor to schedule an ELISA test. If you test positive, ask for the Western blot test, a more specific test which will confirm it.
Dan Roberts shared his frustrating battle with Lyme's with you to build public awareness of a disease that took so much from him.
To learn more go to www.webmd.com and type in Lyme's Disease. An article in collaboration with the Cleveland Clinic is the simplest, best description of the disease, its symptoms and how to diagnose and prevent Lyme's. To comment, e-mail [email protected]
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Interesting. The Cleveland Clinic writes a article on something they don't seem to know much about. They told me "there's no such thing as lyme in Ohio."
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