Unusual illness might be Lyme diseaseBy Dale Heberlig, April 14, 2004
Ken Goshorn spent nearly four years in a battle against the crippling effects of a mysterious illness -- sometimes crawling on his hands and knees to get around his home -- before he began to suspect his problems might be stemming from chronic Lyme disease.
Felled in the fall of 1999 by a general physical weakening and failing muscle coordination, Goshorn, 57, first sought treatment from a chiropractor, then his family doctor and, finally, specialists at Johns Hopkins Hospital where he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
He says he was told there was no hope for improvement.
Mild signs of recovery
Now, eight months after visiting a western Pennsylvania doctor and embarking on a treatment of large doses of antibiotics, Goshorn says he sees mild signs of recovery he was told never to expect.
Goshorn, a former supervisor in Southampton Township, Cumberland County, says doctors at Johns Hopkins told him there was no hope of improvement from symptoms of ALS. However, he and his physical therapist at Shippensburg Health Services, a Summit Health facility, say he has made some modest strides in recent weeks.
Goshorn says he took a "kill me or cure me approach" after his new doctor gave him the go-ahead for physical rehabilitation therapy. He says stressful exercise aggravates the symptoms of ALS patients.
Therapist Mark Maynard says in two months of treating Goshorn's symptoms, he has seen improvements that are "atypical" of ALS expectations.
"With ALS, patients go downhill with overwork, but Ken's stronger, his gait is improved," Maynard says. "He was walking on his toes (to maintain his balance), now he's back on the balls of his feet."
Mission from God
A reverent man with strong religious convictions, Goshorn believes he's been given a mission by God to do everything he can to educate others who suffer from similar symptoms.
Dr. Joseph Joseph, Goshorn's physician in Hermitage, Mercer County, is unwilling to talk about Goshorn's specific circumstances or the particulars of Lyme disease, but Goshorn has no such reservations.
"I've met so many people in this area with symptoms like mine, maybe a dozen people I've run into," Goshorn says. "The more I learn about it, the scarier it gets, but I try to make some fun out of all this, because God told me this is a challenge to life. If I die, that's OK, but if I wake up in the morning and see the sun shining, it means God has someone else for me to talk to."
Word of mouth
Goshorn learned of his Mercer County doctor through word of mouth, from a friend he calls Cindy.
He says the treatment regimen prescribed by Dr. Joseph calls for heavy doses of antibiotics for an extended period -- much longer than 3-4 weeks described on the website of the Center for Disease Control.
According to Goshorn, Cindy has been on the antibiotic regimen for two years. "It's a long, slow process," he says. "She's getting better."
His friend's success motivated him.
"I wouldn't have gone out there if just anyone told me, but I saw the results Cindy got," Goshorn says of his friend.
He says Cindy was also diagnosed with ALS and was on a pronounced downward track before embarking on the heavy antibiotic treatment recommended as an alternative treatment by some doctors for the treatment of Lyme disease.
Goshorn worries that people won't find out about alternative treatments for what is diagnosed as ALS.
"Many doctors are so busy with their regular work that they just don't know about the alternatives," he says. "People have to find out for themselves and insist on other options."
Often mistaken for ALS
Goshorn says Internet research he's done recently indicates Lyme disease is often mistaken for ALS or other afflictions. The disease is difficult to diagnose, he says, because spirochetes, the slender spiral bacteria of Lyme disease, migrate to organs from the bloodstream and can't always be detected by a blood test.
He was diagnosed with Lyme disease on the basis of a Western Blot test that indicates the presence of the bacteria associated with the ailment. Goshorn says even the Western blot test is only about 60 percent accurate.
Goshorn's symptoms became obvious to him in October 1999, although in hindsight he thinks the signs were there much earlier.
"I've pulled hundreds of ticks off my body in the years I worked in the woods and fields as an excavator," he recounts. "And, when I think back on it, I remember tripping or stumbling many times. Those could have been early signs of muscle control problems."
Lyme disease is transmitted by deer ticks infected by the blood of mammals the ticks have fed upon. As many as 23,000 cases were reported in the United States in 2002.
Disease underreported
According to the CDC, the disease is grossly underreported. Twelve states account for 90 percent of the reported cases, with the 3,959 Pennsylvania cases ranking behind only Connecticut -- where the disease was first identified in the town of Lyme -- and New York.
The onset of Lyme disease is usually marked by the appearance of a red "bull's eye" rash at the site of the tick bite within 7-14 days. According to the CDC, the disease can manifest later as chronic symptoms without the appearance of the bull's eye.
The best prevention is to avoid ticks. Proper outdoor clothing and the use an insect repellent containing DEET is recommended.
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