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Lyme Stories

Stephanie's Lyme Story

You would never detect disabling pain in Stephanie's calm, cheerful voice. She sounds energized and prepared to face the future, confident that the protocol she's on will help her fully recover from Lyme. Although she feels better now, the 39 year-old has endured many years of suffering and misdiagnoses, including two years when she was confined to bed. She had recently graduated as a registered nurse when she discovered that her mysterious symptoms indicated that she had Lyme.

Her course instructors in medical school "never even mentioned Lyme disease," she says. "You'd think they would know something."

Stephanie and her husband want to have a couple of kids, but wish to wait until she gets the all-clear signal from her Lyme doctor. The illness has been tough on the couple financially. She lost her medical coverage because she could not continue to work outside her home, and she estimates that their total out-of-pocket expenses have topped $100,000. As a newlywed when she first discovered how sick she was, she's definitely looking forward to leading a fuller life with her husband.

"He's still looking forward to the 'in health' part of the marriage vow," she laughs. "He's done the 'in sickness' part."

She is optimistic about the future, now that she has been in treatment for six months with Dr. Daniel J. Cameron, MD , of Mount Kisco, New York. Dr. Cameron is the current president of the International Lyme and Associated Diseases Society (ILADS).

Initially, doctors explained Stephanie's symptoms as being caused by a Brown Recluse spider. They told her that nothing could be done except bed rest. However, as she slowly began to put together the pieces of the Lyme puzzle, she eventually recognized that she had most of the classic Lyme symptoms, including rheumatoid arthritis and unbearable fatigue. Fortunately, her research led her to Dr. Cameron.

LDRD members, please log in to listen to Stephanie's story, and hear details of her antibiotic protocol and other supplements she has found helpful.
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Katy's story: Teens & Lyme

Katy says the hardest thing about having Lyme is that nobody understands.

She has trouble with word recall. She is susceptible to low blood sugar crashes. She is 15, and like so many others Lyme patients, at first her doctors misdiagnosed her condition, believing instead that she had a viral infection such as mononucleosis or Epstein Barr.

For six months Katy struggled against crushing fatigue and a painful skin rash, trying her best to keep up in school. Medications for the ailments doctors thought she had were only making her sicker. Her skin rash became so acute that her parents began to suspect their daughter might have contracted a flesh-eating virus. Fortunately, her grandmother, a registered nurse, listened carefully to her complaints and suspected that it might be Lyme. Her grandmother insisted Katy see a Lyme specialist. Katy's prognosis changed for the better when she received a correct diagnosis and subsequently began treatment with Dr. Chandra Swami, of Heritage, Pennsylvania.

Adults dealing with Lyme find it to be an alienating and frightening experience, but try being a teenager with Lyme -- and on top of that, a high-energy competitor. Katy excels in running and cheerleading and she is avidly honing her journalism skills and other pursuits. Her aim is to be a broadcast journalist, and in fact she is currently the "weather girl" for the local news station, which airs at her high school. Short-term memory loss isn't something that a young person should have to deal with. Imagine trying to survive the rigors of a normal school day!

For example, one day at school after diligently producing a video project and forgoing lunch, Katy experienced a vicious attack of low blood sugar. Recognizing that she'd better eat something immediately, she took out her sack lunch.

A school administrator snapped that she wasn't allowed to eat lunch sitting where she was. "Should I let all 900 students eat their lunch in here?"

"All the other 900 students don't have Lyme disease," countered Katy, put in the terrible position of having to defend herself for being ill.

One of the problems, says her mom, is that Katy looks great. She's vibrant and rosy-cheeked, and appears perfectly healthy. There's really no way for her teachers and school administrators to tell, simply by looking, that she struggles with painful symptoms every day.

Members, please login now and listen to Katy tell her story. Just wait until you hear what her lunchtime video project was all about, and why it was so engrossing that she forgot to eat. This young woman is a genuine inspiration.

Become an LDRD member an listen to all of our success stories and interviews with Lyme experts.
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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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Going for Gold in spite of Lyme

23-year-old champion archer Mel Clarke of Great Britain was asked what it meant to be preparing for the Summer Paralympic Games in Bejing, which opened Sunday.

"The honor to represent your country at that level, it's incredible. I didn't think I was going to have the opportunity."

Lack of confidence in her athletic ability was not the reason for Clarke's doubt. Rather, it was a tick bite that had resulted in Lyme disease.

In 2003, Clarke was paralyzed and partially blinded by Lyme disease. She was told she'd never shoot the bow again. Since age 11, she has used a wheelchair due to arthritis. A fearless competitor, she rejected the notion of giving up her dream of gold. Instead she worked hard to heal from Lyme's brutal symptoms and recover movement, sight and agility. Three and a half years ago she began training for the 2008 Paralympic Games.

The Summer Paralympics began in Rome in 1960, for athletes with physical, mental or sensory disabilities. They are held in the same host city as the Olympic Games, and run by the same organization. They begin three weeks after the Olympics closing ceremony. "Para" is from a Greek word for "alongside," and is not related to "paralyzed."

Mel Clarke currently holds 20 county records, 10 national able-bodied records and eight world records. In addition to going for the gold in Bejing over the next few weeks, she is also eagerly anticipating competing in her home turf in the London Olympic Games in 2012.
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Waiting room - Lyme story

I was sitting in the crowded, stuffy waiting room, when the guy seated across the aisle started talking.

"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."

My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.

The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.

My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.

I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.
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