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beating lyme

Beating Lyme takes courage

Advocating for yourself requires courage. For years I've suspected that chronic Lyme patients have got to be some of the gutsiest people around. After listening to the personal success stories of a number of people who are beating Lyme, it appears that courage is an ingredient they have in common.

For example, Darryl tells about his fierce battle with Lyme symptoms, his struggle to find adequate medical help, and ultimately, his success. As he explains, he makes a living as a professional athlete, racing bikes and working for the studios as a stunt man.

Stunt work is dangerous. These guys and gals deal with a gamut of risky activities, such as faked accidents, explosions, and racing away from the scenes of television crime. It's safe to assume that a stunt guy would have guts.

But imagine the courage it took for Darryl to lose the physical ability to work, to have to begin advocating for himself without any help from friends or family members, to fill out form after form of insurance information. To live alone on disability for a period of three years. And all the while, to endure the intense symptoms that we've all experienced in varying degrees, thanks to this pernicious disease.

Of course, you can easily imagine his situation, because yours is probably not so different from his. You may not be a stunt guy (or gal), but your struggle has undoubtedly been just as difficult.

Are you beating Lyme? I would like to hear--and share--your success story. Write to me here.

Borrelia Burgdorferi, Lyme bacteria

Borrelia burgdorferi, or Bb, is the notorious bacteria that causes Lyme disease. Bb is just one of three hundred strains of spirochetes worldwide. Other strains of spirochetes cause diseases such as relapsing fever and syphilis. Bb is a spiral-shaped microscopic organism that can scoot around inside the body by rotating in place, like a corkscrew. After its host, the tick, downloads Bb into the bloodstream of a critter or a person, the spirochete can leave the blood stream and invade the tissues and organs.

Although it can cause such frightful, wide-ranging symptoms, to glimpse this tiny pathogen requires a powerful microscope. The Bb spirochete is infinitesimally small. According to the Lyme Disease Foundation in Connecticut, as described in the book, Beating Lyme, it would take fifteen hundred of them laid end to end to equal one inch. "If bacteria were laid side to side, one hundred thousand Lyme bacteria would be required to equal one inch."

Willy Burgdorfer, PhD, was the entomologist who discovered the Lyme microorganism. Scientists honored Dr. Burgdorfer by naming the Lyme spirochete after him. I've just received a copy of Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease, by Constance Bean with Lesley Ann Fein, MD, MPH. I think I'll pour myself another cup of green tea, settle in and read some more. Chances are you already know some of what's in the book, since Lyme patients tend to read voraciously in order to get educated about symptoms and treatment. We're adding book reviews to the LDRD, so keep an eye out for more news and expert recommendations.

Beating Lyme

Before Karol, a diagnostic technician, received a correct diagnosis for Lyme disease, she saw 14 doctors over a four year period. One after the other, these well-educated (though ignorant about Lyme) physicians tested her for many conditions. Karol lives in Texas, and according to the region's doctors, "you can't get Lyme in Texas." So, they searched for the cause of Karol's pain and sickness. Early on, she did get tested for Lyme, but since the test was negative it was ruled out and forgotten. She could have a brain tumor, they suggested. She might have multiple sclerosis. Whatever the reason for her seizures and dizziness, the doctors never suspected Lyme.

One day, she happened to catch a nurse practitioner on the television news, talking about the difficulty of diagnosing Lyme disease. Listening to Ginger Savely, FNP, Karol made the decision to go and see her. "I wasn't very optimistic," says Karol, about receiving a diagnosis. After all, it had been four years. When she did get positively diagnosed for Lyme and began antibiotic therapy, she was thrilled. "That's weird, I know, to be so happy about having a disease," she says. However, the affirmation gave her the strength to fight it. Like so many of us, she found the experience of not-knowing, for so many years, to be almost as debilitating as the disease itself.

Karol now describes herself as 95% better. Listening to her story is both familiar and uplifting. She's a testament to patience and persistence through suffering and confusion. She talks about the ways that Lyme changed her life. Her attitude is upbeat, and she believes that positive thinking has a definite place in her personal healing journey.

LDRD members can login and listen to Karol's story.