LDRD Success Stories Audio Interview Series
Here you will find interviews with people that are successfully treating Lyme and moving towards a symptom-free life.
Want to be interviewed? Contact Suzanne at [email protected]
Interview with Debbie
Debbie Bassett reminds me of a friend I had in college, also named Debbie, who faced life’s twists and turns with a resiliency and sense of humor that welled up from some eternal energy source.
“At one point, all I could eat was baby food,” laughs Debbie. “I lost 25 pounds.” Neither of these statements are the least bit funny, but somehow throughout our entire conversation I found myself laughing right along with her. Gallows humor: a big relief when you’re dealing with something as serious as Lyme disease.
But it wasn’t this 40-something, mother of two’s ability to find the humor in the situation, so much as her strong intuition and intense need to know, that guided her to ultimately find the Holtorf Medical Center, in Torrance, CA, where she began treatment for Lyme.
The basic trajectory of her story line is familiar to many Lyme patients. Sickness, misdiagnosis, searching, then finding a doctor or medical professional who finally leads to a correct diagnosis and treatment. But treatment is often less of an ending point, and more of a start. I know it’s a terrible thing to say, but sometimes I have envied that people can get a clear diagnosis of cancer, and begin treatment for it, while Lyme patients may suffer for months and years without any definitive diagnosis. On the contrary, Lyme patients are often told they have to get a handle on their stress, take a chill pill, or seek a psychologist’s help for mental trouble.
In Debbie’s case, after landing in the ER twice due to headaches, being told by neurologists that nothing wrong could be found, she was handed subscriptions for Prozac. But she knew something was wrong. She told the doctors she suspected she had an underlying virus that they weren’t locating. It seemed unbelievable to her that “nobody’s taking the time to analyze the situation.”
Frustrated, sick, Debbie wound up in Scripps Hospital in San Diego, where she spent 3 days as doctors examined her, determining what they thought was the problem. They scheduled her for gall bladder surgery. It was then that she experienced an interesting turning point. I won’t tell you the whole story -- listen to her tell it.
Debbie’s warmth, generosity and sweetness is a balm capable of soothing the bruised souls of anybody who has suffered through Lyme. She says it is important to share her story so that other people know they are not alone, and that it is possible to pull through in one piece again, as she is doing. Currently on five different antibiotics, Debbie’s in full throttle on her healing path. Please feel free to contact her, as she wants to give her support to others who are going down the same road, dealing with Lyme. Her email address is: [email protected]
“It’s not an overnight journey,” she says. But with smart medical attention, patience and a sense of humor, we can heal.
Listen to the interview with Debbie
Update with Darryl
Pro bike racer Darryl Crews is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer.
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" bike race, a twenty-six mile, grueling uphill 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 race.
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!
LDRD members, 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
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.
Listen to Stepahnie's story
From the time she was three years old, Perry Louis Fields has wanted to be the world's fastest runner. Now 30, the US Track and Field competitor says she's training at the top of her game. What makes her athletic success so sublime? Perry's torturous encounter with Lyme disease in 2003, which she says she has now beat.
"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 it 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.)"
Listen to Perry's story
Here is an inspiring story of a person perhaps a lot like you, who suffered alone with Lyme disease for many years before at last finding help.
"It's an intense pain that doesn't go away, and nobody can understand it," explains Joe, who struggled desperately with symptoms that nearly drove him to suicide during the six years prior to his finding treatment at a clinic in Germany. "It's confusing for the person who has it, trying to explain it to their friends and their employers."
Joe believes he contracted Lyme during his childhood in an area endemic for the disease. He was sick constantly. However, his early illnesses were never associated with the ticks that were crawling all over the family dogs and in the woods where Joe played. It was believed that he simply outgrew these childhood illnesses, but the story was far from over.
After returning home from a vacation with friends in Barcelona, Joe became very sick. He went to see a general practitioner MD. Instead of finding help, the doctor threw him out of the office, claiming Joe's problems were "all in his head, and he should go see a psychiatrist."
Poorly performing Lyme tests didn't help with the random physical complaints that Joe presented to other doctors he went to seeking help. Finally, he located the Borreliose Centrum Augsburg in Germany. Here is where Joe's work toward healing from Lyme officially begins, and his life takes a dramatic turn for the better. Especially compelling is his description of the supporting therapies and his determination to heal. Today, he has returned to the working world and started a thriving business from his residence in Zurich, Switzerland.
Listen to Joe's Story
"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 in his life 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.
Listen to Jerry's story
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.
Growing up on the east coast before moving to southern California as a young adult, he says he and the other kids were always in the woods and exposed to ticks. He played with ticks as a child. When he was a toddler, a neighbor pulled one out of his scalp. As a trained athlete accustomed to operating on a "mind over matter" basis, he's always had a very high pain threshold. He told his doctors that they couldn't judge his symptoms the way they did non-athletes. For example, a mysterious pain that would have sent a regular person to the ER hardly phased him, and he chalked it up to working out too hard.
Since his diagnosis in July 2007, his mother has also been tested and found to have Lyme, although she doesn't seem to have many symptoms. He speculates that it's uncertain how long he's had the disease, and may well have been born with it. Another close relative had Alzheimer's, which is known to be tied to Lyme disease in some cases.
As is the case with so many Lyme patients, before being correctly diagnosed, Darryl saw 35 different doctors. He was on disability and unable to work for three years. His healing journey was arduous and long, including IVRoCephin and a host of other medicines. I asked how important he considered physical exercise was in healing from Lyme disease, and he answered, "mandatory." Aside from the usual benefits, he talked about exercise being one of the ways people can measure the changes they're going through, whether for better or worse.
Nowadays, Darryl is much happier, and he's begun his journey of helping others who may not yet know they're suffering from Lyme, and that if they seek help from a Lyme literate doctor, they can get better. He's mobile, strong and back to racing and working as a stunt man, some of the most rigorous physical work around.
Listen to Darryl's story
Do you think you could run a marathon or participate in an ironman competition with Lyme? This dynamo has done that, and more. While listening to her tell her story, bear in mind that she now works as the office manager of a trapeze school, and is a frequent 'flier.' CJ's story begins at summer music camp, where her excellent skills on the flute and piccolo were undoubtedly leading toward a chair in a prestigious symphony. However, while at camp she was bitten by a tick and contracted Lyme disease.
CJ's arduous trek back to health is a dramatic story with many ups and downs that will sound all too familiar to Lyme patients: Inability to work. Inability to walk without crutches. Loss of disability benefits. A marriage bond too weak to stand the stress of a debilitating illness. Perhaps most disheartening of all, the loss of a childhood dream - along with her professional music skills. Along the way, while working as a nurse, CJ decides to help a young friend who is facing two grueling years of chemotherapy. She runs in a race to raise money for leukemia, and it hurts. She finishes, but not without challenges. Yet she continues running and taking the high road. Entering rigorous physical competitions such as the ironman, she even ventures into the sky -- on the flying trapeze.
Listen to CJ's story
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. 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.
Listen to Katy's story
Karol, a diagnostic technician, lives in Texas. According to many otherwise well-educated doctors, "there is no Lyme in Texas." Like many of us, she went from one health care practitioner to another for four years, without finding the underlying problem. She saw a total of 14 doctors. They were on the verge of convincing Karol that she had neurological damage. They told her she might have a brain tumor, or possibly MS. She received a battery of tests seeking a neurological reason for her physical and mental distress.
One day, she happened to catch a television news segment on Lyme. Listening to the nurse practitioner, Ginger Savely (who is one of our Lyme experts here at the LDRD), on TV, Karol decided that she had to go and see her. Understandably, by the time she saw Ginger, she "wasn't very optimistic" about receiving a diagnosis. After finally getting antibiotic treatment, Karol describes herself as 95% better. She is a testament to patience and persistence through suffering and confusion. Lyme patients will find her story very familiar, and ultimately very uplifting. She leaves us with a poignant reminder that positive thinking has a bearing on our healing journey.
Listen to Karol's story
"It's been a rollercoaster," says Marguerite. The neurological problems that she suffers from now are increasing, she says, and she worries about losing what little memory she has left. When she first discovered she had Lyme, she was living in Fairfield, Connecticut. She was bitten more than once. Short courses of doxycycline did little to give her relief. She even received the controversial Lyme vaccine, which was only available for a brief period of time due to its ineffectiveness.
Marguerite's story is painfully familiar. Her first symptoms were much like having the flu. Then came migraine headaches. Disabling back pain and short term memory loss made continuing to work almost impossible. After seeing three infectious disease doctors -- who will not acknowledge her positive test results for Lyme -- she is still actively looking for a Lyme aware doctor to treat her.
Listen to Marguerite's story
Rick G's Story
Rick, a husband, father, sports lover and salesman, lives in northern California. Before he contracted Lyme disease, he lived the lifestyle that some lucky Californians are privy to -- as he describes in this interview, he was a runner, a cycler, and a swimmer. "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 tells us. However, his activities were soon severely curtailed by mysterious symptoms, including a painfully frozen shoulder.
His Rheumatoid Arthritis doctor recommended surgery, which he had, and which didn't help. He was sent from doctor to doctor and no one knew what the problem might be. He spent over $25,000 in medical tests without receiving any helpful answers. At one point, Rick was popping sixteen Advil per day, eight in the morning and eight at lunch, "just to get through the day." At night, he self-medicated with wine. After finally receiving a correct diagnosis and starting treatment with ILADS physician, Dr. Raphael Stricker, Rick believes he's about 90% better now, and has been able to resume his normal level of activities. His story is remarkable.
Listen to Rick G's story
Bea of Colorado Springs, contacted us with the desire to share
her story in order to bring hope to those of us suffering with Lyme
disease. Bea spent nearly a decade dealing with serious health
challenges and was hospitalized and treated for pain, but never tested
for Lyme disease. A chance meeting with a friend led to a positive
diagnosis for Lyme, and eventually to antibiotic treatment, which she
followed for about a year. Since then, she has discontinued treatment
with antibiotics and started on a protocol of herbal antimicrobials.
Bea has become progressively healthier. When we spoke recently she
excitedly told us that she and her doctor believe that within a few
months she will not need to continue treatment.
to the Audio Interview
Johny Asia's Story Johnny Asia is healing from Lyme disease after a long struggle, made more
challenging by the fact that he plays the guitar for a living. For a
time, memory loss and rheumatoid arthritis, muscle twitching and
crippling fatigue robbed him of his ability to perform. Johnny began
his treatment with conventional medical therapies, but tells us that
his healing progress intensified when he started using herbal
alternatives Samento, Cumanda and Quina, protocol recommended by
physician and medical researcher Lee Cowden, MD. I spoke with Johnny on
November 28, 2006.
Listen to the interview with Johnny Asia