Ann Prow contracted Lyme disease more than 20 years ago after walking through the forests of Door County, Wis.
A tick burrowed under her skin and released the bacteria that causes Lyme disease. After two decades of misdiagnosis and what she said was a lack of medical knowledge, her condition worsened. The bacteria pulsed through her body, sapping energy, creating pain and wasting away her mental acuity.
Then, in 2001, a specialist discovered the root of the problem. Prow had developed what's known as chronic Lyme disease. It's a lifelong illness that -- if not treated -- can cause death and disability.
If diagnosed earlier, Prow believes she could have overcome the illness.
Now that she has regained her strength, she's fighting a new battle against the Infectious Disease Society of America (ISDA). The organization has published guidelines that call into question the validity of Chronic Lyme Disease.
"There is no well-accepted definition of post-Lyme disease syndrome," reported the ISDA. "This has contributed to confusion and controversy and to a lack of firm data."
Without a treatment plan or diagnosis standards, Prow worries that patients with Chronic Lyme disease will continue to live undiagnosed and without proper insurance coverage.
Katherine Morrison, another Payson resident living with Lyme disease, was involved in a Nov. 30 protest rally in New York, speaking out against the ISDA's guidelines.
"My concern is that my insurance will use these guidelines to deny the medication that is helping me regain my health," the Payson resident and Lyme disease sufferer said. "I was very saddened and frustrated at first when I heard about these guidelines.
"It was encouraging that there was such a good turn out for the protest. But, my heart dropped when I saw the sign being held by a little girl. It said, ‘All I want for Christmas is my meds.' That is the bottom line and what this is all about."
Lyme disease is contracted when a tick carrying the offending spirochete -- a type of bacteria -- floods the bloodstream. Early symptoms include a bullseye-like rash on the affected area. As the illness progresses, joint pain, cognitive impairment and chronic fatigue can overwhelm the patient.
"It's hard to get rid of and once you've had it in your body for 20 years, it's hard to eradicate," Prow said.
Prow and her husband, Joe, both have Lyme disease. He, like many others with the illness, was diagnosed with ALS, otherwise known as Lou Gehrig's disease -- a degenerative condition that erodes the nerve cells in the brain and spinal cord. Joe is losing his ability to swallow. Doctors also misdiagnosed Prow. They thought she had chronic fatigue syndrome, characterized by ongoing and profound physical and mental exhaustion.
"Lyme disease is devastating the lives of hundreds of thousands of individuals and we are all at risk," wrote veterinarian Scott Taylor, for the Autoimmunity Research Foundation. "Many patients are suffering with chronic Lyme disease and continue to be misdiagnosed and mistreated. In many cases of Lyme disease, a correct diagnosis doesn't occur until after several months or more often many years of suffering with the disease. By then, it has caused severe illness, disability and permanent damage."
But there's hope. Prow said with immediate medical attention and knowledge, Lyme disease is curable.
For more information about Lyme disease, contact Prow at (928) 468-1410. She is wired into a support network of specialists and fellow patients.