Marguerite's Lyme story
08/22/08 18:03 Filed in: Lyme Disease Story
"It's been a rollercoaster," says Marguerite, who began looking for a Lyme literate doctor when she first contracted the disease many years ago. She had just experienced the death of her second husband. She had two adorable puppies, and was active in church, taking yoga, working and staying physically fit when she discovered she had Lyme disease. Living in the heartland of Lyme in Fairfield, Connecticut, she was bitten more than once.
She got herself to an infectious disease doctor the minute she detected a tick bite, and was given short courses of doxycycline, which she now suspects were not long enough. She even received the controversial Lyme vaccine, which was only available for a brief period of time due to its ineffectiveness.
This is a frustrating and familiar story: Marguerite's Lyme symptoms began as flu-like feelings and migraine headaches. Her severe low back pain and neurological challenges made it very difficult to work, even though her company allowed her to work from home. She developed apnea, insomnia, painful swelling in the joints and more. She's gone to three infectious disease doctors who she says won't even listen to her positive test results for Lyme. Today, she uses patches for pain control, and is actively looking for a Lyme aware doctor to treat her.
We wish you well, Marguerite!
Members can listen to Marguerite's story. Please consider joining the LDRD.
She got herself to an infectious disease doctor the minute she detected a tick bite, and was given short courses of doxycycline, which she now suspects were not long enough. She even received the controversial Lyme vaccine, which was only available for a brief period of time due to its ineffectiveness.
This is a frustrating and familiar story: Marguerite's Lyme symptoms began as flu-like feelings and migraine headaches. Her severe low back pain and neurological challenges made it very difficult to work, even though her company allowed her to work from home. She developed apnea, insomnia, painful swelling in the joints and more. She's gone to three infectious disease doctors who she says won't even listen to her positive test results for Lyme. Today, she uses patches for pain control, and is actively looking for a Lyme aware doctor to treat her.
We wish you well, Marguerite!
Members can listen to Marguerite's story. Please consider joining the LDRD.
|
ABC covers Lyme debate - part 2
08/04/08 16:33 Filed in: Lyme Disease in the news
LDRD vlog
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
Watch the video
* Lyme disease tests are often misleading
* Lyme symptoms can mimic hundreds of other conditions
* Many Lyme patients do not receive a correct diagnosis until the Lyme bacteria has had a chance to replicate throughout their body
Does your doctor know how to test for Lyme? Is he or she Lyme aware? ILADS physician Dr. Raphael Stricker told us in an exclusive LDRD interview that the conventional Lyme tests have a "coin-toss sensitivity," meaning that you could get the same results if you just flip a coin.
Do you have to go outside IDSA recommendations to get the answers you need? The woman in this news story considers herself virtually cured of Lyme, after two and a half years of antibiotics therapy.
Are some conventional doctors beginning to understand that these tests, developed over 30 years ago, are outdated and inadequate?
Watch this brief news story on the great Lyme debate. Journalist Kathy Fowler continues the 3-part investigation. Leave your comments here and also send drop her a note at lyme@wjla.com Please share this link with others you know are concerned about Lyme disease symptoms.
Rick's Lyme success story
07/23/08 12:37 Filed in: Lyme Success Story
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.
Beating Lyme
07/15/08 12:21 Filed in: Lyme Success Story
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.