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Chronic Lyme Disease - hard to diagnose, hard to treat, controversial among medical field

GREENE COUNTY, Mo -- A mild winter season could translate into more ticks and more bites this Spring. According to the Center's for Disease Control, cases of Lyme Disease has steadily risen in the last decade.

The data suggests people in the Ozarks shouldn't have to worry about ever getting Lyme Disease. However, several people who spoke with KY3 say that data isn't telling the whole story, and that ignorance about this debilitating disease could lead to a lifetime of pain and suffering.   

"I was depressed. I was anxious. I have significant mental fog," said Jenni Fansler.

"There are days that you feel so bad you truly think you are going to die," said Elizabeth Ferguson.

"I think I still have a long way to go. I still have memory issues. I still have joint pain. I still have fatigue." said Eric Figg.

Three different people -- from three different areas of the Ozarks -- are all fighting the same thing. It's something that comes with a laundry list of symptoms.

"It gets into your cells. It gets into your nervous system. It gets into your joints. It gets into all these places and it's harder to treat," said Fansler.

"I went through my phases like 'am I crazy?' because it is so strange," said Ferguson.

According to the Centers for Disease Control, they're fighting something that barely exists in Missouri--Lyme Disease.

"We've been told everything from 'Lyme doesn't exist in Missouri; it's only on the East Coast," said Kimberlie Figg.
 
"Some doctors don't even believe Lyme Disease exists. Even though I come and 'here is my positive test. I have the symptoms," said Ferguson.

CDC data suggests Lyme Disease is only prevalent on the East Coast and up North. Advocate groups like the International Lyme And Associated Diseases Society believe it is a nationwide problem that shouldn't be ignored.

"People are being told that it's rare and that's it hard to get and we don't live in an area where Lyme exists. That's a problem because none of that is true," said Kimberlie Figg.

The controversy is more complex than whether or not it exists in Missouri. "The skepticism comes more in with the later stages. A lot of disagreement in the medical community about whether or not late term Lyme disease exists," said Fansler.

"I've had lyme for so many years; it is very chronic," said Ferguson.

According to the Columbia University Medical Center, CDC criteria isn't very helpful for helping detect late stage Lyme Disease. A patient's treatment can either not occur or could be delayed.

"There's many, many, many days that I didn't think I would live to see the last day,"said Ferguson.

That delay can result in a treatable illness becoming a chronic, less responsive one.

Caught early, antibiotics can wipe out Lyme Disease before it becomes a problem.  However, that's easier said that done. Not all cases involve a bulls eye rash around the tick bite that people often associate Lyme Disease with.

"We did basically $4,000 worth of tests-blood tests, nerve connection study, MRI, and came up with nothing," said Fansler.  In the beginning it's frustrating. "I had been to two family doctors, a nurse practitioner and a neurologist." 

Once it declares war on your body it's crippling

"It attacks your different organs. It attacks your nervous system. It attacks your muscles. It attacks your brain,"explained Ferguson.

Because Centers for Disease Control data states Lyme Disease barely exists in Missouri, finding a doctor to diagnose the tick born illness can be difficult.

"It's really hard when you feel bad, physically, emotionally, and something as simple as finding a doctor can be really hard," said Ferguson.

"The doctor, to her credit, she did say some doctors don't believe there is Lyme disease around here. I see a few cases every year and treat them," explained Fansler.

If you do find a doctor willing to take Lyme Disease into serious account, diagnosis isn't easy.

"The testing isn't very effective," said Dr. Mark Woods.

"Our first test came back negative in his office. The standard test that most doctors offices do, the ELISA test," said Kimberlie Figg.

It can take several weeks after infection for the body to produce sufficient antibodies to be detected. Patients tested during the first few weeks of illness will often test negative.

"Patients that have diseases that don't make sense or symptoms that don't go together," said Dr. Woods. "The best thing is to keep that open mind so that you can look into possible causes."

Treatment is even more controversial.

"We've been told already, now that we are into our second month of antibiotics," said Kimerblie Figg, "that they are not going to give us anymore."

Guidelines from the Infectious Diseases Society of America call for standard treatment of a two-week course of antibiotics. But the International Lyme and Associated Diseases Society guidelines say continuing treatment for several months or even longer for is reasonable. It's up to the doctor to decide which route to take.

"We need doctors who aren't afraid of us as patients. I've had more than one doctor who has said 'I don't' want you as a patient," said Ferguson.

Copyright © 2014, The Baltimore Sun
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