New group supports victims of Lyme disease
Those dealing with Lyme disease and its devastating and mysterious symptoms do not have to suffer alone.
Karen Ruberto of Forward Township started the Butler County Lyme disease Support Group this spring for people with Lyme disease and others affected by the disease.
Ruberto said she was called to help others after her own experience with Lyme disease and chronic Lyme disease the past several years.
“I had this overwhelming voice screaming 'You need to help people learn what you've learned and heal if they can by educating them and giving them resources so they can go out and help themselves or their loved ones,'” Ruberto said.
Butler County is the No. 1 county in the state for new cases of Lyme disease, according to data from the Pennsylvania Department of Health. There were 641 new cases diagnosed in 2016, the most recent year for which information is available.
The problem with the disease is it's easy to catch and difficult to treat, Ruberto said.
Standard tests for diagnosing Lyme come back with false negatives 50 percent of the time, Ruberto said. Additionally, Lyme is known as the “great imitator” because its symptoms are often confused with a slew of auto immune diseases, including multiple sclerosis, rheumatoid arthritis and lupus.
Because of that, many physicians estimate the actual number of people with Lyme disease to be much higher, possible 10 times as much, Ruberto said.
The Butler County support group is under the umbrella of the PA Lyme Resource Network. PA Lyme was founded in 2012 to provide Lyme disease education, patient support and advocacy. There are more than 20 support groups across the state associated with PA Lyme.
They had 30 people at the first Butler chapter meeting in June, Ruberto said. At the August meeting, they will be screening the documentary “Under Our Skin.”
At the monthly meetings, Ruberto hopes to bring in doctors and other health professionals to speak about Lyme and related topics. They may also spend time sharing stories and listening to each other about their journeys with the disease, she said.
The group is not just for people with Lyme disease. It can be for parents, significant others or family members of those who have Lyme disease or a person who has symptoms and has not yet gotten a diagnosis.
“This gives them tools to help them understand what they're dealing with,” she said.
Ruberto's own journey with Lyme disease began in June 2015 when her family moved back to the area from North Carolina. Within months of living back in Butler County, Ruberto said she came down with flu-like symptoms.
“You'll get a fever, very lethargic, terrible headache, terrible muscle aches and joint pains,” she said. “The thing is that the flu isn't a common thing in the summer months.”
It wasn't until she found the telltale bull's-eye rash on her torso that it became clear it wasn't just the flu. Ruberto went to the urgent care facility in Cranberry and was diagnosed with Lyme disease after getting a positive test back. After a 21-day course of antibiotics, she was considered to be cured.
However this past winter, Ruberto said she was bedridden with an unknown illness that made her joints swollen and painful and left her lethargic. After visiting several doctors, an auto immune specialist concluded it must be chronic Lyme disease.
Even less is known about chronic Lyme disease, Ruberto said, which is when Lyme patients continue to have symptoms after treatment. She used a naturopathic approach to recovering from the inflammation from chronic Lyme and was motivated by her experience to help others.
“Because there is so little understanding and so much misunderstanding about Lyme, you have to be your own health care advocated,” she said. “That's what PA Lyme does. We provide information and resources to give them the tools necessary and go out and find those clinicians to help make a difference.”
The Butler County support group is under the umbrella of the PA Lyme Resource Network. The local group meets the first Tuesday of the month from 6 to 8 p.m. at the Mars Public Library, 107 Grand Ave. There’s also a private, online support group on Facebook for the organization. The next meeting is schedule for Aug. 7.
