The month of May with warmer weather and the start of the summer season brings renewed concerns over Lyme Disease and possible exposure to the ticks which carry the bacteria infection.
Advocates for better access to medical care in regards to diagnosis and treatment are pressing for more awareness of the condition. That would especially apply to longer term cases where people say they have been suffering from its debilitating effects for years.
There is an ongoing debate in the medical community over proper diagnosis and care for such cases. Some doctors feel patients could be misguided and there could be harmful or dangerous complications if they follow procedures for long term use of antibiotics.
Recently 2 on Your Side spoke with some patients and their loved ones who hope to see some change.
Consider the case of Andrea Andolsek of Collins who recently got a cane when she turned 25. She says since the age of 14, “Ever since I was younger it’s like there’s a monster in your body, cause it moves. Like one day your legs won’t be working, the next day it will be your head, next day it will be your arms or something so it’s constantly moving. I can be really good one day and the next day I can’t get out of bed.”
That’s a shared assessment among many of the people and loved ones attending a Lyme Disease support group meeting at an Orchard Park restaurant.
That monster infection Andrea refers to stemming from a little insect. It’s the deer tick which can bite and spread it to a human after it becomes infected.
Over 300,000 cases are documented in the U.S. each year.
The specific number has grown in Erie County in recent years with the Centers for Disease Control reporting up to 30 cases in 2014.
That could include children like Ty Oley of Lancaster. His mother Kim says, “He’s losing feelings in his legs, that’s new where’s he starting to fall a lot. He’s getting worse.”
Then there’s 20-year-old Stephanie Szymanski of Marilla, her mother Juliette says, “For six years she has a headache that has never gone away.”
There are adults like Chuck Roll who says of his infection, “The bacteria hides in your joints, it can go through tissues so what happens is you take antibiotics and your symptoms go away. But there’s always some spriochettes that get in your body and once your immune system goes down you get stressed, the Lyme sparks back up.”
The typical Lyme infection begins after a tick bite and this red bull’s eye rash can appear with the physical flu – like symptoms of chills, fever, headaches, fatigue, soreness, stiffness and swelling. Most people recover in three weeks or so.
Some people feel they’ve been suffering for years from a chronic, lingering infection.
However Stephanie Szymanski says, “I had a few doctors tell me I was crazy, I was psychosomatic.”
Patients say they seek out what they call “lyme literate” doctors willing to handle their cases and the sometimes difficult, complicated diagnosis. That’s because Lyme can mimic other diseases like multiple sclerosis. And the specialists are usually located elsewhere like Dr. Daniel Cameron of Mount Kisko in Westchester County. He is a practicing internist, epidemiologist where there are many more cases.
Dr. Cameron says this about why it can be difficult to find a physician to treat Lyme Disease. “You often have to use clinical judgment. We’re so dependent on tests that clinical judgement sometime scares doctors…they’re not sure how long to treat.”
In part that’s because long term treatment can involve long term use of antibiotics. That’s even for some patients who use intravenous delivery. The fear is it can cause complications, some serious or even life threatening.
Cameron says, “Sometimes doctors will shy away or they’ll move on to some other diagnosis. it’s important because you want to do the right thing but you don’t want the state to be intimidating.”
Actually in December 2014, Governor Cuomo signed a bill to allow doctors to use alternative treatments outside the medical mainstream without triggering a state office of medical conduct investigation that could jeopardize a doctor’s medical license. Cuomo said his children were once infected and one of his dogs died from Lyme Disease.
This past weekend this playground at Holmes Elementary School in Tonawanda was actually closed for pesticide spraying when a tick was found there.
Advocates for long term Lyme Disease treament say it’s making their case. Rebecca Roll, the wife of patient Chuck Roll says, “I think it’s similar to a lot of diseases that in the past were not acknowledged and that’s all Lyme disease patients want. They want people to realize that their disease is real and that they need to get better.”
2 on Your Side did reach out to speak with some infectious disease specialists on Lyme Disease diagnosis and treatment.
They refused with the contention that it becomes too emotional for patients with a charged debate similar to the controversial issue of abortion.
The State Senate passed a bill which would require the State Health Department to set up a public awareness program about Lyme Disease and Tick Borne Diseases.
It would be aimed at preventing future cases with more information for the public about ways to limit exposure.