Mother: It took year to figure out son had Lyme disease

JACKSONVILLE, Fla. – After it took a year for doctors to figure out her son had Lyme disease, Melissa Bell is now telling of what her son suffered through because of the disease.

"My child suffered excruciating pain, missed half of sixth grade, was fainting, lost the ability to walk many days," Bell said of her son Ryan (pictured below). "It was brutal."

Bell recalls a conversation she had with Ryan three years ago, when he was 11.

"One day our son came home from school complaining, 'Mom, I'm not sure what's going on. I'm falling down in P.E., I'm dizzy,"' Bell said. "He started suffering from a sensory disorder. He was ultra sensitive to light and to touch. Taking a shower would put him in excruciating pain."

Bell took Ryan to the doctor; many doctors. They didn't know what was wrong with him. For months, tests were conducted, but it wasn't until a doctor at Johns Hopkins Hospital in Baltimore suggested testing Ryan for Lyme disease that anyone suspected a tick could be causing his illness.

Ryan Bell
Ryan Bell

Even though Bell said she asked her son's local doctors to test him for Lyme disease, no one did.

"Unfortunately, the doctors here did not feel it (Lyme disease) is a real risk," she said. "We were told that Lyme disease does not exist in Florida or is very rare and that it could not be Lyme disease. He declined over the course of a year. He would have migraines that would require I.V., morphine. He would be screaming for help."

After a year, Bell said, doctors finally tested her son for the disease that is passed to humans through a tick bite. Ryan tested positive.

"We discovered that he not only had Lyme disease, but he had six other infections," Bell said. "Lyme disease causes immune suppression that can lead to other infections. With a tick bite you can actually get a real cocktail of parasitic, viral and bacterial infections. My son's doctor not only missed Lyme disease, but also a host of infections."

She thinks the delay in diagnosis led to her son's severe illness. The Centers for Disease Control and Prevention, at the time, listed deer-borne ticks as a danger of Lyme disease. Those kinds of ticks are typically only prevalent in the Northeast.

Bell said the test used to diagnosis Lyme disease only checks for the type of bacteria in that particular tick.

But Dr. Kerry Clark, an associate professor of public health at the University of North Florida, said he has tested many ticks found in the Southeast that have tested positive for Lyme disease, not just here in Florida, but also in Georgia, North Carolina, Texas and Virginia.

The most common carrier of the disease is the Lone Star tick.

Clark said his findings are significant because, "for years, medical practitioners and the public have been told that Lyme disease is rare to nonexistent in the southern United States."

Clark said he has also discovered that Lyme disease is often mistaken for illnesses such as fibromyalgia, chronic fatigue syndrome, lupus, multiple sclerosis, rheumatoid arthritis, Lou Gehrig's disease, Parkinson's, ADHD, and even Alzheimer's.

There is a myth that ticks only live in wooded areas. Ticks live in any grassy area. Clark said the best way to remove one is to use tweezers to pull the insect out. Clark also will test a tick for free.

Bell said she never saw a tick on her son. She said they can fall out after 3-4 days. Tick bites can leave a rash on the skin. Other symptoms include fever, headache and fatigue.

"It's crucial for parents, especially since children are at greatest risk of Lyme disease, to know to do daily checks for ticks on their children. Not just in  dense brush, it can be in your backyard, on soccer fields, anywhere that there's grass, you can have ticks," Bell said.

On Saturday, the Florida Lyme Disease Association will be holding a fundraiser to help pay for research, prevention and the search for a cure. It will take place at River City Brewing Company on the Southbank and starts at 3 p.m.

Tickets are $15-$25, children younger than the age of 5 are free. For details of who will be performing, more information about Lyme disease, or how to reach Clark for free tick testing, click here.

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