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Family battles Lyme
Patti Jares, Staff Writer
The Wickenburg Sun
Wickenburg, Arizona
Wednesday, December 13, 2006
Dirk and Sonja Almstedt were a self-sufficient and industrious couple. When they moved to Wickenburg seven years ago, Dirk built a small but successful auto detailing business, Sunnyside Professional Auto Detailing, and the couple started family. But recently Lyme disease brought their lives to a virtual standstill. The disturbing fact that Dirk, Sonja and their 6-year-old daughter all have confirmed cases of the disease is raising more questions than answers among the medical community. The situation has turned their lives into a virtual nightmare.
The couple began showing signs of Lyme disease several years ago but the symptoms went undiagnosed until last June, when Sonja became so ill they sought medical attention.
"Her pain started on June 22," confirmed Dirk. "Life went to hell after that - it's destroyed her completely."
The first two nights her pain was so severe she was taken by ambulance to the hospital, and the third day she was admitted to Barrows Neurological Institute, where she was diagnosed with multiple sclerosis. When treatments did not help, Dirk began to research her symptoms on the Internet. What he found was alarming: she had symptoms of chronic Lyme disease.
According to the Center for Disease Control (CDC), Lyme disease is now the "fastest rising vector-borne disease in the United States," with reported cases 150 percent higher in 2005 than in 1991. The CDC goes on to explain that further complicating the situation is the fact that "the disease can go undiagnosed, with symptoms often confused with a host of other illnesses. This happens because the bacteria that causes Lyme disease reacts with each individual's unique DNA, resulting in no two infected persons having exactly the same set of symptoms."
Unfortunately, the CDC has such narrow guidelines in effect to diagnosing Lyme disease that it is commonly misdiagnosed - especially chronic Lyme. In the book "Everything you need to know about Lyme Disease and other Tick-Borne Disorders," Karen Vanderhoof-Forschner explains how in 1990, the CDC established a uniform definition intended for reporting purposes only, but many physicians have misused it for a diagnostic tool.
Only a small number of doctors are considered experts on the subject; the CDC sites one reason being that most medical professionals have little or no experience recognizing and treating Lyme disease. Another reason is the perplexity of the bacteria itself. The bacteria causing Lyme, borellia, is considered a "smart" bacteria - almost impossible to grow in a laboratory, and can actually change forms. It is also extremely slow growing.
Easily misdiagnosed because of its ability to mimic other diseases, it is almost impossible to tell the difference between chronic Lyme disease and multiple sclerosis. There is no test currently available to make the determination and only doctors who are experts in the disease could tell the difference.
Dirk and Sonja have spent the last several months attempting to convince doctors that Sonja has Lyme. One who has listened is Dr. Richard Melde, who has a practice in Wickenburg.
"Sonja fits the symptoms to a tee," said Melde "On top of that she had a positive test. Unfortunately, the FDA does not recognize the test used to determine Lyme, calling it `experimental.' Because of this, insurance companies will not even cover the $250 test.
"I don't think the complexity of the disease is well understood," admitted Dr. Melde. "Conventional medicine would say you have to have a tick bite, rash or other symptoms."
Lyme disease was first discovered in the United States in 1970, and later named after the town that had an outbreak among children in 1975: Lyme, Conn.
The disease is commonly caused by the bite of a deer tick, and can cause a "bulls-eye" rash, but according to Dr. Scott Taylor, DVM, a veterinarian who has Lyme, the disease can be transmitted by other species of ticks, and less than 50 percent of patients with Lyme disease will have the rash. Scott goes on to say that most physicians don't know how to recognize and treat cases of Lyme disease, especially the misleading cases of chronic Lyme disease, calling the situation a "plague of ignorance."
Sonja is currently suffering from severe "cluster headaches" and body pain.
"We're not managing right now," admitted Dirk emotionally, explaining that by caring for the two youngest children during the day (Nicklas age 4 and Cailin, 13 months) he has little time to spend on his auto detailing business, and the disease is wearing on him as well.
"But I am thankful for friends and Jeff Hull, the pastor of the church next door (Faith Baptist) who have helped watch the children. I don't know what we would have done without them."
Their 6-year-old daughter Merlin, whose Lyme was confirmed when tested along with her father (the tests for both showed levels of the disease the second highest possible), will need treatment, but according to Dr. Melde, treatment is another piece of Lyme's perplexing puzzle. If the disease is not diagnosed and treated immediately, the conventional two-week treatment of antibiotics is not effective, and long-term treatment is essential.
"The treatment is to go on long-term antibiotics - for six months to 18 months. It's pretty hard on the body, not the same as chemotherapy but not very healthy," said Melde.
Because of the unorthodox treatment, doctors are criticized and even censored for treating Lyme diseased patients.
"Some doctors have discontinued treating Lyme disease because of harassment, and some have even had their licenses removed," stated Melde.
"I've always worked hard, usually seven days a week," acknowledged Dirk. "We've always made our own living, but now we're running out of money. I am making a third of what I used to make, and doctors are asking a lot of money - $500 for the initial visit and $300 after."
Melde is committed to helping the young couple.
"I knew very little about Lyme until I met the Almstedts," said Melde. "They came and asked me for help, and I told them I'd do anything I could. They have done an amazing amount of research - they're pretty bright people and their life has been miserably affected by this illness - there's no doubt about it."Courtesy: www.lymeinfo.net
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New regulations could cost Lyme disease patients
Felicia Megdal, Roundup staff reporter
Payson Roundup
Payson, AZ
December 8, 2006
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.
Courtesy: www.lymeinfo.net
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© 2006 The National Lyme Disease Memorial Park Project
