Lyme disease patient diagnosed self
By Laura D'Alessandro
Dr. James Burns, owner of the Main Street Med center in Salisbury uses a scaple to remove a tick from a patients back.
(First in a two-part series)
OCEAN CITY -- Local attorney Jay Phillips spent four-and-a-half months with constant flu conditions, a migraine headache and a fever of 103 degrees before he finally realized he might have Lyme disease.
"I estimate I had it for about 10 years before it broke out," he said. Phillips' initial diagnosis didn't even come from a doctor. He discovered it himself.
"Here I am sick as a dog and tired all the time, aching all over, stiff neck ... the whole nine yards," he said. "I had come in contact with the Pennsylvania Lyme Disease Association and had a pamphlet with a test in the back."
Phillips went down the list of symptoms in the pamphlet. He said he scored around 75 percent positive, but when he approached his doctor he wasn't given any help.
"I subsequently have learned that a lot of doctors have an aversion to being known as a Lyme doctor. It's just politically unpopular," he said.
Unable to find treatment, he sought the help of the International Lyme and Associated Diseases Society and was directed to specialist Dr. Gregory Bach who, like any Lyme specialist, is located three to four hours away.
During one of his many visits to Bach's Pennsylvania office for hefty antibiotic treatments, Phillips met people in the waiting room with astonishing cases.
A girl in her mid-20s had been misdiagnosed with multiple sclerosis and was prescribed steroids.
"She had been treated at the University of Pennsylvania and John Hopkins; she's suing them for malpractice," Phillips said.
The steroids made her Lyme disease worse, Phillips said. He described her as just now able to stand on her own, and with impaired speech.
Phillips also ran into a familiar face in Bach's office. Billy Boesche, a fellow Ocean City resident who had relocated to Columbia, Md., had been infected with Lyme disease three times. His first two infections came from tick bites on Assateague Island.
"A neurologist at John Hopkins told him there was no such thing as chronic Lyme disease," Phillips said.
Boesche died June 10 in his home. His obituary said he suffered from chronic Lyme disease and subsequently developed amyotrophic lateral sclerosis.
Boesche, Phillips and the young girl he met in the waiting room are just a few among the many people who have had trouble finding proper treatment for Lyme Disease.
In 2005, 1,235 cases were reported in Maryland and 891 cases were reported the year before, according to Robert Beyer of the Maryland Vector-born Disease Interagency
Work Group.
Despite word of its prevalence on the Eastern Shore, the Worcester County Health Department has only confirmed eight cases in 2005 and seven in 2004. However, Debra
Stevens of the department said this data may not include cases that do not fit the Centers for Disease Control and Prevention's criteria.
"For a confirmed case to get reported to the CDC and meet the criteria, the bull's-eye rash has to be at least 5 centimeters," Stevens said. "Or they must have the lab test and symptoms."
But not every infected tick bite leaves the signature rash. Phillips said the standard blood test, the ELISA test, used by doctors is only about 65 percent accurate.
Phillips said the western blot test and more advanced DNA testing is accurate but is not accepted by mainstream doctors who are also unwilling to treat or recognize chronic Lyme disease.
"Insurance won't pay for that. They don't like you to have it unless the Lyme shows up on the standard blood test," he said. "But it moves in and sets up home in the cells."
Now, Phillips takes a high dosage of medication and must cleanse his kidneys and liver every day so the antibiotics don't damage them.
"I have to go to Pennsylvania every month and every month they draw blood to see the status of my various bodily functions," he said.
If he had only been diagnosed sooner, the treatment would not be so severe.
"When it becomes imbedded in the cellular structure it takes long-term and high antibiotic therapy," he said.
The Lyme Disease Association of the Lower Shore and other organizations, such as ILADS, are working to make Lyme Disease treatment widely accepted and available.
Reach Laura D'Alessandro at 410-213-9442, Ext. 19 or e-mail ldalessand@dmg.gannett.com.
Originally published Thursday, June 22, 2006
Worcester County Times