Darryl is back--Listen to his success story
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" fun bike race, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that ride.
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them.
Some of Darryl's key points for beating Lyme:
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can.
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too.
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better.
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too.
The really, really great news? Darryl's better!
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here.
Listen to the entire interview with Darryl for free!
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Vote for CJ! Our Lyme Hero
Some days we all do, and I'm glad to bring you an exciting piece of news about a young athlete and registered nurse whose story is chronicled on our Lyme Success Stories series.
Here is an update on CJ Jaffe, who remains a bubbling fountain of energy despite continued trials with Chronic Lyme symptoms. CJ is a triathlon competitor and one of our favorite success stories (read more about CJ's Lyme success story here).
We in the Lyme community don't have too many opportunities to get psyched about something fun. So, don't miss this chance to put a bit of excitement on your healing path. On November 22, 2009, CJ will be competing in her 2nd Ironman Triathlon with Chronic Lyme. More importantly, she will be raising money for the Turn the Corner Foundation to help fund further research.
Here's the fun part: You are invited to follow CJ online on the day of the race. Simply go to ironmanlive.com and click on "Athlete Tracker." Type in "JAFFE" and her stats will come up. So tune in, watch, cheer on CJ and get engaged.
Vote for CJ!
In addition, CJ has been nominated for the Ford Everyday Ironman Hero award, to be presented in front of a crowd of more than 5,000 people. If she wins, the prestigious award will help her build Lyme awareness. Plus, she would receive an extra $1,000 for her charity, the TTC foundation. Please cast your vote for CJ Jaffe for the Ford Everyday Ironman Hero award by emailing helen@nasports.com The more nominations the better!
"I have been feeling okay, considering being treated for the symptoms I have," says CJ. "But, I'm still focused on athletics and I am convinced that between athletics and keeping a positive outlook, it's saving my life. I think I'm going to continue on this road for a while."
There's more!
Stay tuned to the LDRD blog for further information about CJ's plans to launch CTJ, "Create The Journey," an athletic team -- local and national -- of athletes like her. People who are passionate about giving Lyme patients a reason to survive, while positively impacting society.
Call for Lyme success stories
However, many people do recover from this profound illness. I recently took a road trip with my significant other, attended a family reunion, and reconnected with friends I cherish. Life is so astonishing sometimes, so precious, that now I have complete days when I totally forget how sick I've been, and what a long, slow climb it was back to a state of health.
I've been collecting Lyme success stories almost from the time I was diagnosed, because I felt strongly that if someone else out there had healed from Lyme, then I could too. My parents brought me up to share good news, so I'm still gathering success stories that others can learn from and be inspired.
Have you recovered from Lyme disease? Are you well on your way to a healthy, post-Lyme life?
People take so many different paths back to living a productive life. Many are able to follow a Lyme-literate doctor's protocol until they're Lyme-free. Many aren't able to afford that luxury, and so they use a combination of protocols and techniques that seem to help. Some are on a strict diet, and they claim that it has helped them walk away from Lyme. Some use herbal therapies and devices such as the rife machine. And considering how bone-crushingly weary Lyme can make us, I'm always impressed by the numbers of people who swear that rigorous physical exercise played a central role in their healing. Many of the people we've interviewed in our Lyme success stories, such as Darryl, who races bikes and works as a professional Hollywood stuntman, talk about applying the mental rigor, discipline and intense focus they honed as a competing athlete, to the path of healing.
Walking away from Lyme is something we all desire to do one day. If you've been successful in doing so, please consider sharing your success story with others. You never know when something you say might trigger an idea in someone's head and help them turn their health situation around for good. You won't be telling other people what to do. You'll simply be relating your own experience, which is in itself, a powerful sort of medicine.
Contact me directly for further information about sharing your Lyme success story.
Thank you.
Stephanie's Lyme Story
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.
Top US Athlete beats Lyme
"I’m not only healthy," says Perry. "I’m healthier than I was before I was bitten (no kidding!). My training and racing proves that. I’m the fastest and strongest I’ve ever been."
Beneath Perry's easygoing persona and her honey-toned Southern accent, she has a fiercely competitive nature. After enduring a miserable four or five month period of powerful antibiotics, she decided to quit the conventional route and devote what little energy she had to researching and finding "the cure," as she calls it. Although her symptoms "made every day a nightmare," she willed herself to begin taking baby steps toward getting back to her goal of running again.
With the dedication and steel determination of a true winner, Perry achieved her dream of not only running, but training as a pro once again.
"What Lance Armstrong did for cancer, I hope to do for Lyme disease. I have sometimes told myself that I wish I had cancer rather than Lyme. Someone with terminal cancer may feel otherwise, but I’m truly upset that the research on this disease is so inconclusive. The treatment for Lyme is inconclusive. It’s like nobody has had any experience with it at all, yet hundreds of thousands of people get it every year (I think that number is more like millions.)"
LDRD members can login and listen to Perry tell her inspiring story about beating Lyme. For Perry's website, please go to beatlyme.com.
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Katy's story: Teens & Lyme
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.
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Joe's Lyme success story
Joe's story filled me with inspiration. "Don't give up hope," he says, and he should know.
Although he now resides in Europe, he grew up in a region of the US where ticks are a part of everyday life, especially for a kid with a dog. Sick during his childhood with mysterious symptoms that he was eventually told he had outgrown, he struggled with chronic pain many years later. After a vacation in Barcelona, he became very ill and dragged himself from doctor to doctor, as one after another refused to treat him for Lyme. He was desperate and suicidal during the roughest period, which lasted six years. At the end of that time he discovered a newly established Lyme treatment clinic in Germany, the Borreliose Centrum Augsburg, and his life took a dramatic turn for the better.
At the clinic, his recovery from Lyme officially began. He was placed on three months of IV antibiotics, but not a "cocktail" blend that some US Lyme doctors use. Immediately, he began feeling better. In addition to antibiotics, doctors at the clinic engaged him in several types of the supporting therapies, including infrared and oxygen treatments. He also uses the powerful herbal therapies from Stephen Buhner's book, Healing Lyme.
Today, Joe has returned to the working world. The terrible six year period now seems surreal to him. "It's an intense pain that doesn't go away, and nobody can understand it," he says. "It's confusing for the person who has it, trying to explain it to their friends and their employers."
Joe feels strongly that people who heal from Lyme should follow up with their doctors, so medical professionals can better track which Lyme treatments are working, and which are not. He has talked to doctors who tell him that often patients leave their care and never update the doctors about their condition. Unfortunately, it's easy to find stories of people suffering from Lyme disease, yet less common to hear about those who are healing and engaged in vital and productive lives again. There's plenty of bad news on the web. This is why we collect and share success stories.
LDRD members, listen to Joe tell his success story here. And please keep your eye out for an upcoming interview with Joe's doctors at the Borreliose Centrum Augsburg.
LDRD members can listen to the interview with Joe by logging in. Learn more about becoming a member.
Tell Oprah your Lyme story
Oprah is interested in Lyme disease. Apparently the Lyme documentary, Under Our Skin, is getting under hers!
Click on the link below and tell your Lyme story to Oprah's Dr. Oz. If you want somebody to actually read it, keep it short, around 100 words. That's not a lot of room. Just include the date you were diagnosed, how--and if--you found a doctor to treat you, and what you're doing for Lyme treatment.
Dr. Mehmet Oz is professor and vice chairman of surgery at Columbia University in New York City, director of the Cardiovascular Institute and founder and director for the Complementary Medicine Program at New York-Presbyterian Hospital. He is a regular contributor to The Oprah Winfrey Show and Oprah.com.
Darryl's Lyme success story
LDRD members, listen to the interview with Darryl.
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Jerry's Lyme success story
For Jerry, the difficulties of Lyme are a thing of the past. Although it took its toll on every day life, and his marriage couldn't hold up under the strain of the illness, he now leads a full, happy life. He's active and loves his work as a professional consultant, and proud of his two daughters, both college graduates. However, for several years during the 90s, Lyme was a force to be reckoned with.
In 1994, he and his family went for a weekend at their cabin in upper Lake Michigan. Upon returning home, he spotted a tick buried in the skin on his ankle. Over the next weeks and months, he experienced painful, swollen joints, especially his knees and fingers.
In January, 1995, Jerry was diagnosed with Lyme disease. Aside from joint pain his symptoms included severely bloodshot eyes and blurred vision that came and went. As a well-educated Lyme patient, he got used to toting a large notebook of his own to his doctor visits. A particular combination of antibiotics seemed to finally make the difference, especially when his doctor was willing to give him the winning combo for a whole year, as Jerry requested. He endured the repeated Herxheimer reactions in order to stay on the medicine long enough to fully eradicate the Lyme infection. But his problems weren't over yet. The next year, while Lyme was still active, he was also diagnosed with coronary artery disease.
While Jerry is not overweight, is an avid exerciser and non-smoker, his cardiac problems led to two different bypass operations and several angioplasties. To this day, he and his cardiologist wonder whether the Lyme infection had anything to do with his heart problems. Jerry believes that a lot of his health problems began with the tick bite.
The elements of this story are familiar, although in some ways Jerry's story is quite unusual. For example, over the entire course of his disease, his treatment was covered by a generous health insurance plan through his employer. I told him he was luckier than most. He agrees.
In March, 2007, he got a Golden Retriever to accompany him while pheasant hunting. One day, he took the dog for a run while riding his bike. A half a block from home, the dog bolted...the story continues.
LDRD members can listen to Jerry's interview. Learn about becoming a member.
CJ's Lyme success story
That was the subject line in CJ's note to me the other day. Turns out she was right -- I did. I just hung up this minute from our conversation, and I'm still smiling. She's one of those sunshiny souls that just can't help but affect people that way. What does she do for a living? She's the office manager of a trapeze school. Not your normal occupation, but then CJ isn't your average person. Actually, she participates in ironman competitions. Does she still have Lyme? Yes. Does she let it bring her down? If she does, she's not letting it show.
CJ's success story, like everyone who has struggled to defeat the disability that can accompany Lyme disease, comes at a price. She was misunderstood and misdiagnosed for a long time. As a teenager, she attended music camp where she concentrated on her highly developed skills as a flautist. Gifted on both the flute and piccolo, and disciplined about practice, she was headed for a life of professional music.
However, a tick bite that she got at camp stopped her in her tracks. She called home, begging her puzzled mother to let her leave early. Her mom knew something was seriously wrong.
CJ's story takes many jogs and unexpected turns. She falls in love, marries, then deals head on with an unsupportive spouse (a bastard and a s^%#head, to quote her precisely). And the most remarkable thing happens. She finds inspiration in a nine-year-old leukemia patient facing two years of chemotherapy. She is a nurse. At his bedside, she tells him that she's going to run in a charity race on his behalf. He looks at her, asks "can you run?"
LDRD Members can login (to the left) and listen to CJ's story.
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Who inspires you?
Musician Darryl Hall was diagnosed with Lyme the same week I was. I feel solidarity with him. Another fabulous novelist, Rebecca Wells, has Lyme. We've got some great role models. GW Bush has had Lyme, and the White House doctors say he's fully recovered. Alice Walker, another amazing writer whose work I've always loved, has had Lyme disease. Just knowing we're not alone, and in fact, we're in some pretty good company, makes me feel a smidge better. Tell me, who inspires you?
Rick's Lyme success story
One day he woke up with a frozen shoulder. He was diagnosed with Rheumatoid Arthritis. Although Rick had been tested for Lyme, the tests had come back negative. His RA doctor told him, "Lyme doesn't exist in California. It's probably not that. You just need to consider that you have arthritis. Then he added, right in front of my wife, 'you have to trust the experts to help make you better,'" says Rick. He laughed. "I'm in sales," he explains. "Whenever I hear somebody say 'trust me,' I know I'm going to get f****d."
His RA doctor recommended surgery, which he had. The pain was still unbearable. He was sent from doctor to doctor and no one knew what the problem was. He spent over $25,000 in medical tests without receiving any answers. He was placed on medications that never seemed to help, and only made things worse. At one point, he was popping sixteen Advil per day, eight in the morning and eight at lunch. At night, he self-medicated with wine. The entire time he was sick, he hid his painful symptoms from everyone he worked with, and never complained, even to his wife. But he wasn't getting better and knew he couldn't go on like that.
Finally, at his wife's suggestion, he realized that he had to trust yet one more doctor. He had Googled "Lyme + doctor" and found a clinic in nearby San Francisco. He walked into the office of ILADS physician Dr. Raphael Stricker. When Dr. Stricker told him he had Lyme, he was flooded with intense relief. After only three weeks of treatment, his symptoms began to disappear.
Rick now considers himself to be about 90% better, and he's been able to return to some of the activities he loves. How did having Lyme change his life? In so many ways, he says. Specifically, his empathy for other peoples' hardship and pain. "My family says I'm nicer now," he adds, laughing.
LDRD members, you can listen to Rick tell his entire story in the members area.
Waiting room - Lyme story
"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.
Beating 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.