"The best way to describe it would if you had the worst flu of your life, and someone made you run a 5K race as hard as you could," Ted Bryan recalls from his experience with the disease. "And you finished."
"I couldn't remember the next word I was going to say," Sharon Shaffer remembers. "My legs... I was shuffling."
It took years for both Ted Bryan and Sharon Shaffer to find the answer for their terrifying and unexplained symptoms, Lyme Disease.
"Didn't know then that there was a tick there," Sharon remembers. "It was actually probably a year after that my daughter was doing my hair, and she said, 'Mom, what is this on your neck?'"
"I pulled it off," Ted says. "Put some creme on it. Thought nothing of it at thirteen. I'd never even heard of Lyme Disease."
Extreme fatigue, memory issues, neurological problems.... All symptoms they later learned stemmed from Lyme Disease.
"I lost the ability to read and comprehend," Ted says.
Each bounced from specialist to specialist. Sharon was even misdiagnosed with Multiple Sclerosis, more commonly known as MS. Some doctors suggested Ted was faking his symptoms, or even had hypochondria.
"One person told me that i needed psychiatric help," says Ted. "That it was all in my head."
In the end, the answer was Lyme Disease. But why was it so difficult to diagnose? There is a test for it after all. Many run into this issue.
It turns out the test is inaccurate, and people frequently test negative for Lyme, when that is not the case. Dr. Robert Mauss, a Lyme literate doctor, says Lyme Disease is capable of tricking the immune system. "Borrelia is very adept at manipulating the immune system," he explains. "You're not really going to get a really great immune response, and so you may not have antibodies that are being generated that can find them."
The road to better health is long. Even now, they may never get back to one hundred percent. "I'm a lot better than I was," Sharon says on a more positive note. "My husband tells everybody I was ready for a nursing home a couple of years ago."
So what is the best course of action to protect yourself and your family from Lyme carrying ticks? Check for ticks daily, and check often. Wear long, light-colored clothes so they can be easily spotted. Check the scalp, armpits, and private regions. They often hide there.
If you find a tick that leaves the signature "bull's-eye," seek treatment immediately. Don't wait. "It's red, and then clear, and then red. If you have it, that's one hundred percent diagnosis for Lyme Disease," Dr. Mauss says.
Sharon and Ted are glad they didn't give up when doctors had no answer.
"If you know something is wrong, stick to your gut feeling until you can really find a solution to the problem," she advises.
Ted says to rely on support groups and those around you. One person in particular, has been his rock."I'd like to thank my beautiful and incredible wife for never giving up on me, and never allowing me to give up on myself," he says.
They hope that sharing their stories raises awareness and prevents others from the turmoil Lyme Disease brought to their worlds.
Sharon started a support group under the PA Lyme Resource Network. For more information about the disease and for support groups, click HERE.
If you'd like to help Ted out with the never-ending pile of of medical bills, click here on his gofundme page.