Lyme Success Story
Joe's Lyme success story
11/14/08 14:28
"I beat Lyme. I'd like to share my story," wrote Joe. To someone hurting with Lyme symptoms, could there be any sweeter words than those?
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.
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.
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Tell Oprah your Lyme story
09/30/08 19:45
UPDATE: The link for Dr. Oz has been removed by Oprah.com.
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.
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
09/26/08 19:24
Darryl is a professional athlete. He races mountain and BMX bikes, and works as a stunt man in Hollywood. When I asked how he would classify his story, he didn't hesitate to call it a success. "I'm 100% better," he says, confidently. You can hear the relief in his voice. Talking about his future, he mentions his work and racing, but it's clear that suffering for so many years with undiagnosed Lyme has influenced his outlook as well. He's now devoted to telling his story wherever he can, and is passionate about helping others.
LDRD members, listen to the interview with Darryl.
Learn about becoming a member and listen to the interviews.
LDRD members, listen to the interview with Darryl.
Learn about becoming a member and listen to the interviews.
Jerry's Lyme success story
09/12/08 17:27
"Work with your doctors, be your own best advocate. Do research, and get a second, third, tenth opinion," says Jerry. "There is life after Lyme disease."
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.
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
08/19/08 11:58
"You've gotta hear this!"
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. Read More...
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. Read More...
Who inspires you?
08/11/08 10:44
I'm a huge Amy Tan fan. If you haven't read her novels, you're missing out on some super funny and insightful stories. Read this and whet your appetite. I remember when I found out shortly after my Lyme diagnosis that Amy Tan also suffered for years from misdiagnosis and severe neuroborreliosis. Reading her story, I hung on every word. Of course, I had to read s-l-o-w-l-y. At that point, it often took me hours to comprehend one page of information. I determined that if the brilliant Amy Tan could slip so low and still pull herself out, I could too. She knew how tough it was. You know how it is. I don't want to be in this club, but since I have no choice I'm going to look around and find someone to inspire me.
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?
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
07/23/08 12:37
Rick, an active sports-lover, was married and starting a family. He was a runner, a cycler and a swimmer. His northern California lifestyle was the type most people can only dream of. "I would water-ski, snow-ski, do anything I pretty much wanted to, looking back. Then I'd hang out with my family, get into the car on the fly, and still have energy on the weekends," he says.
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.
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
07/18/08 16:37
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.
"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
07/15/08 12:21
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.
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.