Digging deeper into the Lyme disease debate

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by Sybil Hoffman

azfamily.com

Posted on January 30, 2012 at 3:18 PM

Updated Monday, Jan 30 at 10:41 PM

SCOTTSDALE, Ariz. -- Doing something as simple as taking a walk used to be something Debra Grizzle didn't have the strength for.

"I got to the point where it was so hard to get out of bed," she said. "No energy. I couldn't exercise."

Unfortunately, Grizzle's fatigue and joint pain lingered on. Doctor after doctor told her nothing was wrong.

"I knew something was absolutely wrong," she said. "That was kind of the fight in me, I kept this fight, to where I knew I was sick, I had to find an answer and so I had to keep searching so that's what I did."

"It is very difficult to diagnose this disease," said Dr. Martha Grout with the Arizona Center for Advanced Medicine.

Lyme disease is a tick-borne infection first discovered in Lyme, Conn., in the 1970s. Most patients get a rash but for many others, only internal symptoms develop.

"They're not testing for it," Grizzle said. "They're not looking for it. It's not on their radar screen."  

Currently, the Infectious Disease Society of America recommends doctors give patients an Elisa test, which only screens for Lyme disease.

"All their bloodwork will be perfectly normal," Grout said. "Their urine tests will be perfectly normal. Their joints will look just a good as my joints. They won't be swollen, they won't be inflamed, none of that, OK, but they can't move in the morning."

Studies show in 56 percent of the cases, patients whose screenings come back negative are later proven to have Lyme disease, which is what happened to Grizzle. It wasn't until she got a different kind of test.

"So six and a half years into it, I got tested with a Western Blot for Lyme and I showed up positive," Grizzle said.

In the Open Eyes Pictures documentary "Under Our Skin," you hear about other people like Grizzle who say chronic Lyme disease is ruining their lives.

"I don't think that the mainstream medicine, the mainstream medical community really, is against the concept of chronic Lyme," Dr. Sam Benjamin contends. "I think that they have not yet seen enough evidence."

"I would beg to differ," Grout said. "I have seen patients with chronic Lyme who have improved on our therapies."

However, Grout admits, "We don't have supporting literature for all of these therapies that we do. The literature that we have is fairly sparse, it's anecdote."

Today, Grizzle is feeling better although she's taking antibiotics intravenously.

"With patients that have this disease, we feel the need to get the word out because it's not right for patients to be suffering and not get answers," Grizzle said.

If you believe you have Lyme disease, you may want to consider asking your doctor to give you a Western Blot test. It's what helped doctors diagnose Grizzle with Lyme disease.

Open Eye Pictures
www.underourskin.com

Dr. Martha Grout
www.arizonaadvancedmedicine.com

Arizona Center for Advanced Medicine
9328 E. Raintree Drive, Scottsdale, AZ 85260
480-240-2600

Dr. Sam Benjamin
www.drsambenjamin.com
15721 N. Greenway Hayden Loop, #103, Scottsdale, AZ 85260-1776
480-661-1880

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