COLUMBIA, S.C. (WIS) - In South Carolina, Lyme disease is rare, Post Lyme Syndrome is a fraction of those cases, and, according to local and national medical experts, Chronic Lyme Disease isn’t real.
But there is an online community in the Palmetto State and around the country who are certain they’ve been suffering from Lyme Disease for years.
Chronic Lyme is described by some patients as a disease caused by the lingering effects of a tick bite. The symptoms are debilitating and can make every day painful and unpredictable.
"I was experiencing really strong brain fog -very tunnel vision - that would immediately go into severe headaches and nausea and I'd have spells like this,” said Ansley Cliff, a patient who sued to be legally recognized as disabled and said she has Chronic Lyme. “I don't feel stable in my head, so I never know if I'm gonna have a day when I can drive or a day that I can't drive. So, that leaves me unable to plan or commit to anything. Life is not like what it was.”
Cliff connects with others who said they have Chronic Lyme on Facebook, which is how she first interacted with Anne Branham. Branham said she has lost almost everything to Lyme: her job, her ability to make plans, and sometimes memories all together.
"Just because we don't all look the same or feel the same, that doesn't mean we don't all have the same disease," said Branham.
At first, experts continuously diagnosed Branham with diseases that didn’t match what she said she felt.
Doctors recommended injections for the muscle pain, sleeping pills to prevent fatigue, and antipsychotics for the brain fog. When nothing worked, she went online.
"Listening to doctors on YouTube discuss Lyme and studies and things and, by then, I had really kind of figured out in my own mind that had to be what I had because that explained everything going on with me,” said Branham.
She now has a doctor she calls “Lyme literate,” meaning a medical professional who recognizes Chronic Lyme. She is on multiple antibiotics and supplements.
However, the Center for Disease Control doesn’t recognize Chronic Lyme Disease and many infectious disease doctors echo the disbelief.
“There is no such thing as Chronic Lyme disease…someone that is constantly affected by Lyme overtime. There are several people that can experience fatigue and increased brain fogginess for lack of a better word for six months to a year after Lyme disease that’s caused Post Lyme Syndrome,” said Dr. Anna Burch, a pediatric infectious disease physician at Prisma Health.
However, even people with Post Lyme Syndrome are rare, according to Dr. Burch. She said it affects about five to 15 percent of people that already have acute Lyme disease.
While she will dismiss Chronic Lyme, she will not dismiss the pain Cliff and Branham feel.
“It might not be Lyme but that isn't to say those symptoms aren't real," said Dr. Burch
As for Lyme disease itself, according to the South Carolina Department for Health and Environmental Control said it is rare to acquire in our state. When asked for exact numbers officials with DHEC offered the followiing statement:
“Lyme disease is transmitted by the Blacklegged Tick, also know as the Deer Tick (Ixodes scapularis). This tick, along with other types of ticks, can be found in South Carolina.”
If someone believes they have Lyme, it can be treated with antibiotics if it is found early, according to DHEC. The longer the patient waits, the patient is more at risk and may have to take antibiotics.
The CDC recommends wearing light colored clothing outside, so it is easier to see if there are any ticks. If a tick gets attached, take it off and clean the area as soon as possible.
Experts say it takes 36 hours for a tick to transmit bacteria.