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: firstname.lastname@example.org
Interview with Jerry B As is the case with so many of us with Lyme disease, there was a time not too long ago when Jerry was busy being preoccupied with life. Resolutely making tracks on the treadmill, he unconsciously pursued his multiple roles as a husband, father and self-described Type A. But around May of 2010, he began “to feel really crummy.” Suddenly he found he was extremely tired, ached all over, had swollen glands, headaches and increasingly disturbing muscle twitches.
At first he brushed it off as a bad flu and continued his daily routines. He did not have a bull’s eye rash. But then the symptoms got worse, and he decided it was time to get tested for Lyme. The result was negative. However, tests did come back positive for an infection that typically accompanies Lyme: Ehrlichia. Treatment began but he continued to feel worse, even taking Doxycycline. At that point, he took the initiative to locate a doctor who specialized in Lyme and could really help him.
Jerry found Dr. Karen Vrchota, in Minnesota. She sent his blood to be tested by IGenEx, in Palo Alto, CA. In addition to three co-infections, Ehrlichia, Bartonella and Babesia, Jerry was positively diagnosed with Lyme. She recommended further treatment including some of Dr. Cowden’s protocol, such as Samento, Burbur and Parsley tinctures.
As Jerry worked with Dr. Vrchota, he branched out to discover many more proactive methods that would allow him to feel in charge of his own therapy. He discovered that truly healing from Lyme disease would require coming at it from every angle, psychological as well as physical, spiritual as well as emotional. He turned his focus on ridding his body of heavy metal poisons and toxins as well as adopting a new approach to exercise and nutrition.
Jerry says that over the past couple years, Lyme disease has become one of his greatest teachers. He has rediscovered the simple joys -- tossing a ball with his kids, slowing down each day to practice mindfulness meditation and noticing life’s small blessings. He has redefined the meaning of success in his life and now gives thanks daily for the things we all too-easily take for granted, until Lyme disease hurts us and challenges us to the core.
Listening to him tell his story it’s easy to see that Jerry has a loving and generous heart, and now that he’s confident he is about 95% healed, he is deeply committed to ‘giving something back,’ as he puts it. Sharing his story with you is a first step in that direction. We discussed the challenges he faced in getting properly diagnosed, his treatments, exercise routines, and the doctors and experts whose protocols and advice helped turn his life around. I invite you to listen to his inspiring story. Listen to the Interview
Stephanie's 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. Listen to Stepahnie's story
Perry'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
"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
Joe'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
Darryl'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
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
Marguerite'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
More to come!
Mary C's Story Mary C. of New Hampshire feels that the time is now right to share her story. She has weathered severe storms to get to this point, including a grand mal seizure, two months isolated in a recliner and two years on the corticosteroid Prednisone.
“Yes, I’ve been prescribed the wrong medicines, and yes, it’s taken a long time to get well,” she says.
But her message to those who are struggling with Lyme? “Don’t give up!”
Mary’s Lyme diagnosis came at a price of many long years. Listening to her story, it seems incredible how many medical professionals offered her questionable advice and ignored obvious signs. For example, she was not tested for Lyme disease even after suffering the seizure. The doctor who examined her told her that “people have seizures all the time.”
She compares her situation to that of a prisoner, wrongly jailed for years, who finally meets a lawyer determined enough to investigate the truth. Finding the prisoner innocent, she is set free at last.
She says, “I’m 58 years old but I feel like I have a new life.”
As for spending so many years “in jail” with the wrong diagnosis, Mary is far from blaming doctors and medical experts. She reminds us, “that is why we call it practicing medicine. We haven’t perfected it yet. And chances are good that those doctors were doing their best with the knowledge they had at the time.”