The following was in the Hillsboro Argus News:

Lyme Disease misdiagnosed, misunderstood, 'mis-insured'

08/21/03 By Delores Raymond

I've been corresponding with a family whose lives have been drastically altered by their daughter's Lyme Disease.

Because I knew very little about the disease, and would guess that there may be others as ill informed as I, this column is intended to share the result of my correspondence and research about this very serious disease. There will be another column next week that will focus on Ashley and her parents.

If you go to Google and type in Lyme Disease, there are links to a number of different websites, including American Lyme Disease Foundation, Centers for Disease Control and Pew Charitable Trust, among others.

What is Lyme Disease?

It is an infection caused by a bacterium that is carried by deer ticks. In its early, localized stage, it appears as a large, red, slowly spreading rash, sometimes around a central bulls eye, but it can establish itself in body tissues, spreading to joints, nervous system and other organ systems, causing symptoms of varying severity.

Lyme Disease was named in 1997 when arthritis was observed in a number of children in and around Lyme, Conn. Further investigation indicated an infectious disease caused by a bacteria that is transmitted to humans by the bite of infected deer ticks.

Perhaps the most infamous animal-borne disease was bubonic plague, but more recently AIDS, SARS, monkeypox, West Nile virus and mad cow disease have all come to us from animals.

The Pew Charitable Trust website presents an article on National Policy: "Animal-Borne Epidemics Out of Control: Threatening the Nation's Health," that laments the lack of a concerted national program to prevent and control these illnesses.

According to the Centers for Disease Control (CDC,) Lyme Disease in this country is mostly found in our northeastern, mid-Atlantic, and upper north-central regions. In 1999 CDC received reports of 16,273 cases of the disease from these areas. However, it is now present in every state in the country except Montana. 69 cases were reported in Oregon between 1997 and 2000.

CDC states that "most patients can be successfully treated with antibiotic therapy when diagnosed in the early stages of Lyme Disease." However, not everyone responds to CDC's recommended course of treatment, usually a course of oral antibiotics lasting from two to four weeks.

The Lymenet Flash website points out: "Many patients complain of arthritis, irregular heartbeat, memory loss and motor skill problems long after they have undergone the standard two- to four-week treatment regimen. That has led some researchers to conclude that Lyme can return as a chronic illness in perhaps 10 percent of those thought to be cured.

"Lyme is much more serious than the public recognizes," said Dr. Brian Fallon, director of Columbia University's Lyme Disease Research Center. "People can have severe cognitive problems for the rest of their lives."

The medical establishment, however, remains unconvinced, and a few doctors have been penalized for their treatment of recurrent Lyme. Pat Smith, head of the Lyme Disease Association, a nonprofit group calling for greater research on the disease, thinks pressure not to recognize the chronic form comes from insurance companies: "They don't want to pay."

Lyme can be difficult to diagnose, with currently available lab tests not always reliable. It sometimes manifests symptoms that mimic fibromyalgia, multiple sclerosis and even mental illness. This can also lead to misdiagnosis and mistreatment of other diseases being mistakenly treated as Lyme.

Some doctors argue that CDC's recommended short course of treatment for Lyme is inadequate, and argue that a longer course of medication, given intravenously, may be needed for some patients. One doctor stated that half the patents he sees, who thought they were cured by only a little treatment, have actually been inadequately treated.

It seems obvious that more research is needed on Lyme Disease.

In addition, sadly, once again, it is also apparent that decisions that should be solely between doctor and patient are being usurped by insurance companies.

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Last modified: 08/10/04