“Never give up living your life. Never give up finding a way to live as pain-free as possible," counsels Shawn Stevenson, who might be close to a diagnosis of Lyme Disease vs. FM or CFS after countless tests, fruitless consultations with 20 doctors including specialists at the Mayo Clinic, a surgery, inability to continue working, and huge medical bills.
The difficulty of her search for a diagnosis so far, told here, reflects the findings of internationally recognized expert Sam Donta, MD. He has said the difference between Lyme and FM/CFS is that the cause of Lyme is clear (a spirochetal bacteria). But, based on his research and practice with Boston University Medical Group, he also feels Lyme is “an important cause of CFS and FM,” and reports that for various reasons the few tests that might identify Lyme often don’t provide definitive results.*
Finding a Reason Behind the Pain
by April E. Clark
Shawn Stevenson has never been so relieved to test positive for a medical condition.
And she's hoping her recent diagnostic evaluation in Colorado Springs provides the first of many clues in solving a painful 18-month-long mystery.
Last week, the former YouthZone case manager from Basalt [Colorado] received word from a Lyme disease specialist that she may be suffering from the tick-borne illness. Symptoms of Lyme, nicknamed the "Great Imitator," are often confused with conditions such as arthritis, multiple sclerosis, Fibromyalgia, and Chronic Fatigue Syndrome.
"People would always say, 'You can't have Lyme disease, you're in Colorado. But that's a major misconception," she said. "The one tick bite I remember was when I was 7 or 8 years old and I thought it was a sunflower seed on my neck. I'm learning symptoms can go dormant for several years and come back."
Stevenson has been in the dark about the cause of her chronic, debilitating pain for 11 years. In May, she traveled to the Mayo Clinic seeking a cause for hip pain that has dramatically changed her life - to no avail.
"I came back frustrated," said Stevenson, who has been unable to work since January. "I have felt like giving up, felt like dying would be easier."
In her quest for answers, she has consulted more than 20 doctors, underwent hip surgery, had eight MRIs (magnetic resonance imaging), CT (computed tomography) and bone scans, and suffered through painful physical therapy. She now owes more than $20,000 in medical bills.
"I've spent the money because I'm worth it, but I've also had to seek support from friends and family," she said. "That's what people in pain should know - that their friends and family want to help. Don't be a pillar unto yourself."
From 5:30 to 10 p.m. on Thursday, July 27, Stevenson's friends at the Colorado 500 and Buffalo Valley are hosting a "FUNraiser" to help her pay mounting medical bills. The charity event features live music by the Earthbeat Choir's teen singers and the Jimmy Dykann Band, free appetizers until 7 p.m., a cash bar, and live and silent auctions.
"I met Shawn through the 500 and I think she's a stellar person," said Lynne Jammaron, a friend of Stevenson's and Colorado 500 volunteer. "All the years she's been involved with the 500, she's encouraged the charity aspect of the event. For her to be in this position, it's a real about-face. She definitely sees a half-full glass of water."
Along with friends and family, faith has played a major role in how Stevenson has coped with her undiagnosed illness. She hopes others who struggle with chronic pain remain as steadfast in seeking reprieve.
"Spirituality and finding a higher purpose is something that has gotten me through this," she said. "The message I want to send is never give up living your life. Never give up finding a way to live as pain-free as possible."
One way Stevenson has worked to achieve a pain-free life is by trying alternative methods of treatment. She has visited a chiropractor, massage therapist and herbologist, and takes homeopathic medicines to avoid pain-killing narcotics.
"My massage therapist at Dr. Dave (Martz's) office told me about greens (a dietary supplement) and PH drops," she said. "I still get fatigued, but it's less than before. Instead of five Vicodin a day, I'm down to two."
Stevenson questioned alternative medicine prior to seeing a naturopathic physician in Aspen. She no longer has her doubts.
"I used to resist that stuff. I was surprised and skeptical, but he hit the nail on the head," she said. "I'm usually more scientific-minded - I need more research. But after driving back from the Mayo Clinic with no answers, I decided to give it a try."
She also consulted Lyme disease specialist Martz in Colorado Springs per the suggestion of a Colorado 500 motorcycle rider's wife.
"Lyme disease creates lesions on the brain like multiple sclerosis (she was diagnosed with MS at 19), and it's this epidemic that's totally misdiagnosed and under diagnosed," Stevenson said. "I've been tested twice before for Lyme and it was negative. It takes an average of two years of symptoms to diagnose. I'm just going to follow what the doctor has to say and probably undergo long-course therapy of antibiotics."
A possible diagnosis - and today's fundraiser to help pay for medical treatment - have given Stevenson hope.
"Now I know what path to go on. There's no cure, but you can manage the symptoms and be in remission," she said. "I'm not done with this. It's just a new beginning to this chapter of this book."
“Finding a Reason Behind the Pain” was first published in the Glenwood Springs (CO) Post Independent (www.postindependent.com) on July 20, 2006. Reproduced with permission.
* See “Fibromyalgia, Chronic Fatigue Syndrome, and Lyme Disease,” by Bonnie Gorman, RN, at http://www.canlyme.com/fibrocfslyme.html This is a summary of Dr. Sam Donta’s presentation to the Massachusetts CFIDS/FM Association in November 2002, titled “The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues.”
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