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The Lance Armstrong of Lyme disease

Caryn "CJ" Jaffe is pure bottled sunshine, a powerful and amazing model for those of us who are sick and determined to get better. She calls herself the Lance Armstrong of Lyme disease. Although she is "bombarded with Lyme symptoms every day," she's worked hard and prepared to compete in an ironman event on Saturday, November 1. What's the lesson for the rest of us? We can do it too. Maybe not race in an ironman, however, we can find the inner strength to set a big goal and then work to reach it, no matter what obstacles are in our way.

"I found out my bib number is 81 (no idea how I ended up with such a low number...it doesn't mean anything but it's kinda cool!)," she told us. "People can go to ironmanlive.com and search for me by name or bib number on race day, 11/1/08."

"I am starting to get very emotional about being a part of this race," says CJ. "I honestly never thought I could make it back to being this kind of an athlete. It truly is a miracle of sorts. I cannot wait to race. Just to get to that starting line is leaving me speechless. I am excited to see what the journey holds during and afterwards!"

Please follow CJ's race online, and forward this story to anyone you know who could use a shot of inspiration. I recently interviewed CJ for our Lyme Success Stories, so members can also listen to her tell her remarkable story. This little firecracker is also going to make a huge explosion with the book she's writing about her struggles with Lyme disease and her grit and determination in fighting her way back to an active life, one that even Lance Armstrong would be impressed by!

It's no coincidence that many of the people who are beating Lyme are dedicated to regular physical exercise. Ask your Lyme-aware doctor about starting an exercise program that is appropriate for your condition.

Ready...set...get better!
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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.
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ILADS to train more doctors

As you are probably all too well-aware, we have a desperate need for more Lyme disease specialists. Driving or flying thousands of miles to see a Lyme literate doctor is not a luxury that most of us can afford.

According to this article in MediLexicon, the International Lyme and Associated Diseases Society (ILADS) has started a new training program to teach more doctors how to diagnose and treat chronic Lyme disease. With financial assistance from the New York-based Turn the Corner Foundation, the program aims to train 100 doctors over the next five years.

"With more than an estimated 200,000 of cases annually, Lyme disease has become the leading epidemic of our time," said Dr. Daniel Cameron, ILADS board president and internal medicine physician. "We need more physician-scientists who will be the future leaders in the treatment of Lyme and associated diseases."

Many physicians are not aware of the complexities of tick-borne diseases, and patients with Lyme symptoms are too often misdiagnosed, under treated or simply dismissed. The disease now known in the medical community as the Great Imitator can be a superb mimic of a hundred other conditions, especially if it hasn't been treated correctly when in the early stage. This is due to the complex nature of the Lyme bacteria, which has the capacity to hide from the body's immune system in order to protect itself. Doctors who are trained to recognize and treat Lyme symptoms will help increase awareness of the disease.

The ninth annual ILADS 2008 conference will be held on October 18-19 in San Francisco. Entomologist Willie Burgdorfer, who discovered the Lyme bacteria we know as Borrelia burgdorferi or Bb, is scheduled to be the keynote speaker. Several hundred physicians from across the globe will be in attendance. For Lyme researchers and medical specialists who treat Lyme patients, the conference offers an opportunity to collaborate and learn about each others' work.
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