Under Our Skin
Lyme disease often goes undiagnosed in Oregon
By Deedee Schneider MA, LMT
You feel frustrated or even hopeless because the physicians can’t diagnose or treat your illness and their prescriptions haven’t made you well. Your lab tests may all be normal, yet you still experience knee pain, headaches, fatigue, insomnia, numbness or tingling, terrible PMS if a female, gastrointestinal upset, strange rashes, infections that don’t go away with one dose of antibiotics, and more.
After months or years of illness and thousands of dollars for treatment that hasn’t worked you discover your actual diagnosis: Lyme disease, which was never seriously considered. You now face protracted antibiotics for a bacterial infection that, over time, gradually penetrated into your joints, ligaments and nervous system. Prompt early treatment likely could have been cheap and brief.
This is a typical story of a Lyme disease patient. In the past year, for example, a local Oregon physician has diagnosed 30 people who have Lyme disease and went untreated, some for more than a decade. In the past few months five more patients with a Lyme diagnosis have sought treatment and five have symptoms highly suggestive of Lyme. There are a variety of testing technologies available for Lyme disease, but all tests are fraught with false negatives. The CDC standard for interpretation is so narrow that almost 50 percent of those who actually have Lyme disease are missed on lab tests.
There is an epidemic of this disease in the U.S. Lyme disease is the most prevalent vector-borne illness in the U.S., and its incidence is rising every year. But some states, like Oregon, do not recognize how widespread this infection is. We have deer in western Oregon. Our deer carry ticks. Veterinarians are seeing tick-borne infections in dogs in Oregon, which means Oregon ticks carry and transmit Lyme disease. Ticks don’t discriminate between humans and dogs.
Lyme disease is a bacterial infection typically transmitted by tick bite, although mosquitoes and biting flies also harbor the bacteria. Common misconceptions about Lyme disease are that transmission requires tick attachment for 24 hours, and that the Lyme bacteria do not exist on the West Coast. Deer are the reservoir of Lyme disease, and as deer populations grow and migrate, Lyme travels with them.
The three clinical hallmarks of Lyme disease are: joint pain that migrates, symptoms that ebb and flow in their intensity and multiple body system involvement. Individuals with Lyme usually have joint pain, especially in the knees, but they may also have neurological symptoms that mimic multiple sclerosis or ALS. They often have fatigue, mood disturbances, abdominal complaints, heart or lung symptoms, chronic pain, hormonal symptoms, sweats or headaches. There is no uniform symptom picture for Lyme disease presentation. Symptoms may develop rapidly after a tick bite or insidiously some time later.
So you can imagine why this condition evades diagnosis. Lyme is difficult for physicians to diagnose, as test results are often falsely normal and patient presentations vary widely. This infection is reportable to local and state health departments. Physicians are kept informed about which infectious diseases to consider by health department reporting of the incidence of cases. Now we go from a disease evading diagnosis to a “Catch 22” situation, where physicians don’t consider or even deny it because the health department says it doesn’t exist here.
The Lyme bacteria, called Borrelia burgdorferi, multiplies slowly and prefers to burrow into viscous tissues like cartilage, and connective tissue. Borrelia burgdorferi is only one of several infectious organisms ticks can transmit by their bite. Borrelia and its companions have many stealth mechanisms by which they hide from detection by our immune systems and from lab testing. Less that half of those infected by Borrelia have the characteristic red target rash at the time of the tick bite. Clinicians and scientists disagree on the best way to diagnose it.
Under Our Skin, a documentary Oscar-nominated film which has been featured by Oprah, explains the scientific controversies and the heart breaking stories of Lyme patients. A free screening of this film will be shown at 12:30 pm Saturday, Jan. 9, at the Corvallis-Benton County Public Library main meeting room, 645 NW Monroe Ave., in Corvallis. Please join us for the showing of the film, the inaugural event for a Corvallis Lyme Patient Support Group. Panel discussion with two Lyme-literate physicians will follow the film.
DeeDee Schneider, MA, LMT, was bitten by a tick near Oakridge four years ago and contracted Lyme disease, which took nearly a year to diagnose. She owns Advanced Bodywork and the Oregon Hearts of Light Center in Corvallis.