Ulster County resident Doreen Peone is all too familiar with Lyme disease. In 2007, Peone, 47 at the time, began experiencing Bell’s Palsy (facial paralysis) and dizziness at work. This was the moment that began her tumultuous two-year battle.
She had been to several doctors and underwent several X-Rays, MRI’s, CT Scans and numerous blood tests. She had six Lyme tests, all of which came back a false negative.
“I was told I had MS, Lupus, Fibromyalgia, a migraine syndrome, Transversmyaltis…and I was even told it was just menopause,” she said. “I was bedridden for a year— I lost my job, became disabled, fought for disability insurance and came close to losing my home.”
During the time she was going through all these tests, bacteria had entered her brain and affected her nervous system, ability to speak, walk, drive and perform normal daily tasks. She said she felt like a zombie.
Lyme disease is a tick-borne illness, transmitted to humans through tick bites. The microscopic insect carries the bacteria called Borrelia burgdorferi, which they pick up after biting mice and deer, according to Pubmedhealth.com.
After discovering she had Lyme, Peone urged her neighbor Robert Aiello, chair of the Ulster County Health and Personnel Committee, to spread the word about the disease.
Aiello said he became so moved by Peone’s illness that he started a Lyme Disease Advisory Committee (LDAC) in Ulster County where doctors, politicians, health officials, the public and Lyme disease victims can meet and share their experiences with the disease and promote awareness.
“When I first became aware of Lyme disease, I thought it was a simple matter of a tick bite, a rash and taking some antibiotics,” Aiello said. “Little did I realize how debilitating and insidious Lyme disease is until I saw my neighbor having to be assisted by two people to cross the street.”
The Ulster County LDAC, established by Resolution Number 55 on March 20, 2012, met for the first time on April 23. Aiello appointed Peone as a member of the community affected by Lyme disease because of her knowledge and intense research of the disease.
The LDAC report said their mission was to study the spread of Lyme disease, review the county’s approach to policy decision and disperse information to physicians and the public. The committee’s goal was to go beyond the normal preventative information which includes checking for a bullseye rash, tucking your pants into your socks and checking pets for ticks. The report said the committee would look at all aspects of Lyme disease and “provide pragmatic recommendations to the Ulster County Legislature.”
Aiello said there are two schools of thought on treating Lyme disease. One is that people with Lyme should be treated through intravenous antibiotics (a 28-day IV injection of antibiotics directly into the bloodstream), or an oral course of Doxacillin that may need to be taken for more than one year.
Peone said there are also alternative treatments, such as integrative medicine, which includes supplements like B-12 or Magnesium, in addition to antibiotics. However, mainstream medicine must follow government guidelines in terms of treatment, she said.
“According to the [Center for Disease Control] and [Infectious Disease Society of America], a short course of antibiotics help,” she said. “Antibiotics brought me to a point where I could function, but I have never been 100 percent.”
The surrounding counties of Green, Dutchess and Orange have had higher rates of tick-borne illnesses than Ulster, but between 2007 and 2009 that changed, the LDAC Report and Recommendations said. Ulster County saw 778 cases of Lyme disease in 2008, the highest in the past five years, and just last year 412 cases of Lyme were reported in the county.
LDAC’s last meeting was on Sept. 13, and Aiello said the state has cut off funding putting them at a standstill. He said despite his requests to Sen. Charles Schumer and Congressman Chris Gibson for $30,000 dollars, the committee did not receive it.
Although the committee may have been halted, Peone maintains her Lyme disease awareness website and remains an activist for those misdiagnosed and suffering from Lyme.
“I feel like a lone soldier fighting the war of Lyme disease,” she said. “This is too scary for words. Something has to change soon, or a population of people will become very, very ill.”