Nurses with Lyme disease form Oregon group
By Administrator on 15/11/2009
Mail Tribune.
Bill Kettler Nov 15th 2009
They say that Oregon needs better resources to treat the misunderstood malady.
Put two nurses with 70 years of combined experience in the same room and chances are they'll find plenty to talk about.
When both have Lyme disease, the conversation transcends the usual shop talk.
Sharon Lee of Eagle Point was infected some 30 years ago in California, when nobody on the West Coast knew much about the strange tick-borne disease that's difficult to diagnose and produces a wide range of symptoms among its victims.
When Judi Johnston of Ashland came down with Lyme during the past year, she realized the Southern Oregon medical community still knows relatively little about the disease.
"I don't know what made me more upset," Johnston says. "Personally, not being able to find the (treatment) resources, or professionally, knowing the resources aren't here."
Lee and Johnston plan to use their nursing experience and training to assist Rogue Valley residents who may not even know they have Lyme disease. They're organizing a support group to help local people determine whether they're infected, and steer them to physicians who can give them appropriate care.
"There's far more Lyme disease than is being recognized," says Johnston, a nurse for more than 30 years. "And we don't have Lyme-literate physicians in this part of the country."
The group's first meeting is scheduled for Thursday at the Smullin Center on the campus of Rogue Valley Medical Center.
The bacterium that causes Lyme disease is transmitted to humans by certain species of ticks, including the blacklegged tick (Ixodes pacificus), which thrives in Southern Oregon and California. The bacterium is also carried by tick nymphs, which are so tiny people often fail to realize they may have been bitten.
Johnston says she "never did see the tick," that infected her.
Lee describes the bacterium itself as "a stealth organism" that evades the body's natural defense mechanisms. If it establishes itself in the body over time, "your immune system can't even find it," she says.
Symptoms vary widely from person to person. The bacterium may attack the joints, the heart, the brain or other parts of the nervous system. Lyme has been confused with a number of other diseases, including multiple sclerosis, fibromyalgia, chronic fatigue syndrome, amyotrophic lateral sclerosis and even Alzheimer's.
"Some people can be sidelined and in a wheelchair," says Lee, who retired to Eagle Point after 45 years in nursing. "Others can respond (to treatment) and do pretty well."
Ticks often carry a number of other infectious agents, and Lee says researchers now believe the wide variety of symptoms associated with Lyme may be related to those other tick-borne diseases.
She says early diagnosis is critical for effective treatment, but tests don't always provide conclusive proof of infection. Some people produce a rash with a characteristic bulls-eye pattern soon after they're infected, but others may not, further complicating the diagnostic process.
Lee says she and Johnston hope to recruit a local physician who might be willing to learn more about Lyme disease so that local people can get effective treatment without traveling to California.
"We want this to be more than a support group," Johnston says. "We want to educate people, too."
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