Pictured is Tioga County resident, Brenda Ferguson, standing near photos of family members who have been her support system during her treatment for chronic Lyme disease. The month of May is Lyme Disease Awareness Month. The second annual Lyme Disease Conference for the community and medical professionals is scheduled on May 7 at Binghamton University. For details, visit www.southerntierlymesupport.org. (Photos by JoAnn R. Walter)
Pictured are numerous prescriptions, herbal medications and other supplements that Tioga County resident, Brenda Ferguson, takes on a daily basis. Ferguson was diagnosed with chronic Lyme disease in 2014 and travels three hours to see a “Lyme literate” doctor in Rhinebeck, N.Y. It is Ferguson’s hope that she will raise awareness by sharing her story.
The month of May is Lyme Disease Awareness Month.
“You should be all better by now” is a comment that Tioga County resident, Brenda Ferguson, has heard from well-intentioned people, and she really does wish she was all better.
For Ferguson, dealing with chronic Lyme disease has been a journey, both physically and emotionally.
Since her treatment regimen began in 2014, she has had better days however extreme pain still haunts her.
More recognition of chronic Lyme disease was made public in the 2009 award winning documentary, “Under Our Skin: The Untold Story of Lyme Disease.”
According to the Centers for Disease Control and Prevention (CDC), “The condition is properly known as Post-Treatment Lyme Disease Syndrome (PTLDS). It is not uncommon for patients treated for Lyme disease to have lingering symptoms, and in a small percentage of cases, these symptoms can last for more than six months.”
The Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) hold differing opinions. According to ILADS, IDSA’s concern about over-treatment is impacting quality of life for patients who need ongoing treatments.
Ferguson experienced ten or more years of various symptoms, including strange problems remembering, blacking out, headaches, digestive issues, among others, and underwent multiple medical tests ordered by doctors. Ferguson got tested for Lyme in July 2014, a recommendation by her former chiropractor, Dale Fluegel.
Like many, Ferguson does not recall a tick bite or rash. By March 2015, antibiotic treatment had left five foot nine inch Ferguson at 110 pounds. Also diagnosed with the co-infection known as Babesia and Bartonella, there were times Ferguson felt she was near death.
As she focuses on getting well, Ferguson is unable to work and pays a majority of medical costs out of pocket. Doctor visits, medications and supplements are covered minimally by insurance, or not at all.
Since choices are limited here, Ferguson travels three hours one-way to an LLMD in Rhinebeck, N.Y. She has since gained back 25 pounds in the last year while taking herbal medications, supplements and diet changes.
Ferguson explained, “I eat clean, only fresh, frozen organic vegetables and most nuts. Gluten and sugar free, no processed foods, yeast or caffeine. If I eat meat, it is without nitrates.”
Richard Horowitz, MD, a specialist in treatments of tick-borne illnesses and author of “Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease,” will be a keynote speaker at the second annual Lyme Conference scheduled on Saturday, May 7 at Binghamton University. Horowitz has been featured on several national television shows and in newspapers.
According to Horowitz, Lyme disease is an epidemic, and cites problems with testing and the “politics of Lyme disease” as two primary hurdles, especially in chronic cases.
ILADS and the National Institute of Health (NIH) state that Lyme disease is the most common vector-borne illness in the U.S., which is transmitted to humans through the bite of an infected blacklegged tick with Borrelia burgdorferi. The CDC and ILADS state that Lyme is most common in the Northeast, Upper Midwest and Pacific Northwest states; however cases have been reported in all 50 states. The CDC reported in 2012 that there were 300,000 new cases, and estimates based on clinical diagnosis that there are over one million new cases yearly, although acknowledged that underreporting is an issue.
Locally, the Southern Tier Lyme Support group (STLS), which started in early 2014, was formed to spread awareness and help educate individuals and healthcare professionals. STLS communicates that fewer than 50 percent of patients with Lyme disease recall a tick bite and fewer than 50 percent of patients recall any classic bulls-eye rash. STLS states that two regular tests performed, the ELISA screening test and the Western Blot are unreliable or not always sensitive enough to detect chronic infection.
A 2016 documentary by SUNY-Broome students, “In the Lyme Light,” focuses on awareness and prevention. The film cites that one of the biggest misconceptions is that the public has little worry if they are not out “in the woods.” Generally, people are at risk in their everyday activities, and can come in contact with the disease just by being in their back yards.
According to the New York State Department of Health (NYSDOH), young ticks, the size of a poppy seed, and adult ticks, the size of a sesame seed, are active at different times from March to November, and both can transmit Lyme disease.
Addressing Lyme as a major health threat and seeking to prioritize federal research, Congressman Chris Gibson (NY-19) introduced H.R. 4701, the “Tick-Borne Disease Research Accountability and Transparency Act of 2015.”
For Brenda Ferguson, she would prefer to be working and enjoying regular activities. Now in a new home, since their Delphine Street home was torn down after the flood of 2011, she hopes sharing her Lyme story will increase awareness. Ferguson also recommends that pet owners regularly check their pets and consider tick prevention products.
For additional information, a number of web sites are available including www.ilads.org, www.lymediseaseassociation.org, www.cdc.gov, www.health.ny.gov, www.cangetbetter.com or the American Lyme Disease Foundation at www.aldf.com.
For information about the 2016 Lyme Disease Conference at Binghamton University, visit www.southerntierlymesupport.org.
