CHARLOTTE, N.C. – A walk in the park has new meaning for Patrice Johnson.
She said something that happened at Marshall Park more than 20 years ago is the reason she is dealing with a chronic illness today.
Johnson went to a jazz concert in the park, and when she got home that night, she had a huge rash that would not go away.
She treated it for several days with cortisone cream, with no luck.
Days later, Johnson developed flu-like symptoms and went to the doctor, who told her that she had been bitten by an infected tick.
“I never saw the tick. I didn’t see it fall off,” Johnson said. “All I knew is that this rash appeared and it was huge. I was given the impression that once I finished the course of antibiotics, then the symptoms would be gone, and they were, initially.”
It turns out that Johnson’s delay in getting treatment led to the development of a serious disease that would slowly reveal itself over time.
For the next 20 years, she developed a number of unbearable symptoms.
Johnson thought that she had a stroke.
Tests for stroke, Lou Gehrig’s disease and multiple sclerosis were negative. Finally, a naturopathic physician suggested the symptoms could have been caused by a tick bite.
At that moment, Johnson realized that the insect bite decades ago could be connected.
“I just didn’t know it was relevant. It was 23 years later and I didn’t think to mention a tick bite,” Johnson said. “I didn’t even realize what the complications could be from that because the previous doctor never gave me the impression that this could be long term.”
Dr. Kivette Parkes said it is not uncommon for people with Lyme disease to be misdiagnosed, most often with fibromyalgia or chronic fatigue syndrome.
“Lyme disease is known as the great imitator because it looks like a lot of different diseases” Parkes said. “The symptoms vary and move from different organ systems, and the illness can look like different things at different times.”
Experts say getting treatment within 24 to 48 hours after a tick bite is key. It can mean the difference between a temporary or short-term infection and developing a lifelong disease.
“One hallmark symptom of Lyme disease is tingling or weaknesses in the extremities,” Parkes said. “Sometimes people say it feels like electrical pulses on your nerves.”
Parkes says a simple blood test can detect the infection, if it is done shortly after the tick bite. After the passage of time, however, a blood test can turn up negative.
“After someone is bitten, it takes a while for the bacteria to reproduce and spread throughout the body. So, if you are bitten, begin treatment right away,” Parkes said. “The longer you wait, the more likely it is that the bacteria will get inside your cells, and once it is inside your cells and out of your bloodstream, the [standard treatments] won’t work as well.”
There is a special DNA test that can detect Lyme disease years after someone has been exposed to it.
But Parkes said that some doctors are not as familiar with the DNA test because there are only a few labs in the country that perform the test.
“The DNA test is very expensive and it is not covered by insurance,” Parkes said. “However, it is the only test that can detect Lyme disease 10 to 20 years after someone has been infected.”
Johnson is now taking 50 to 100 pills a day to help her manage the symptoms of Lyme disease.
“People need to protect themselves,” Johnson said. “I want them to know how easy it is to catch.”
The typical Lyme disease rash is a bull’s-eye rash that usually spreads in a circle. It is clear in the center and the rash fans out in a circular pattern. If you notice anything like that on your skin, get checked out by a doctor right away.
Experts say some people don’t even remember getting bitten by a tick. They may remember just a little itch or rash on their neck, back or leg.
If you spend time out in the woods or if you go camping or have pets, you are more likely to be exposed to ticks and you need to take extra precautions.
It is best to wear long sleeves and long pants and to use insect repellant when you are outside.*