It’s such a small creature, but it has such a devastating bite.
The scourge of Lyme disease has had a life-altering effect on a significant number of Mid-Atlantic residents. According to the Centers for Disease Control and Prevention, Lyme is the most common tick-borne disease in the United States. The bacterium borrelia burgdorferi is a word much larger than the protagonist in this story — an arachnid about the size of a pinhead. The creature, referred to as a deer tick, is infected with the bacterium.
Individuals may encounter the tick just about anywhere, outdoors and indoors in rural locations. According to 2017 data from the Centers for Disease Control and Prevention, Maryland had 1,194 confirmed cases of Lyme disease, over 150 more than Virginia and more than neighboring Delaware and West Virginia combined.
“I’ve had Lyme disease for 16 years,” said Patricia Branham of Port Republic, who explained she was a teenager when she was bitten by a tick. The bite "didn’t show the initial bull’s-eye [rash] so I didn’t go to the doctor right away. I began to have migraines and my joints were hurting. I remember my hands would ache and I couldn’t bend my fingers in the morning.”
“I suffered with sudden hearing loss in my right ear, ringing in my ear, extreme headaches and recurring ear infections,” Jessica Bly of Owings said. “I had an evolving rash. The provider I saw kept saying it was dermatitis.”
“I was bitten by a tick in 1997 at the Prince George’s County Fair in Upper Marlboro,” Theresa Hudson recalled. “I started having flu-like symptoms within a few days of being bit. I had the bull’s eye on my chest and was feeling miserable.”
“I contracted Lyme disease over 28 years ago,” Barbara A. Brady of Huntingtown said. “It went untreated for the first 15 years because my doctor overlooked my blood test results.” Brady called her experience “a living nightmare of debilitating pain, mental confusion, medications and hardships.”
When she was 2 years old, Calvert County resident Regan Hall was first diagnosed with Lyme. “I have contracted the disease at least twice in my lifetime,” said Hall, who added antibiotics normally used to treat the malady have not helped. “They made me violently ill."
“I’ve had chronic, late-stage Lyme for years. It always killed me,” Stephanie Breme of Huntingtown said. For her, the intrusion by Lyme disease into her life has sent her on a quest to aid others who are suffering. “I try to advocate for many going through it and walk them through the journey," she said. "Because of my Lyme, I became a huge proponent of more ‘all-natural’ means to treat my Lyme. It’s taken me down a road of going to school for aromatherapy.”
For Scott Jones, the journey with Lyme disease started 52 years ago when he was 14 and camping at the mouth of the Connecticut River.
“I came back to the campground covered with little baby ticks,” Jones recalled. He then began to show the symptoms — “summertime flu, weakness, whole body pains. It totaled me. I was booted from the track team, tennis team and field team. They said I wasn’t the same kid they saw last spring.” His family doctor attributed Jones’ lethargy to “growing pains.”
Lyme has intruded Jones’ life numerous times, with the devastating impacts on his careers as a businessman, teacher, writer and researcher. Jones indicated he has discovered an alternate medication treatment that allows him to function physically and mentally. Jones infection occurred one year before the medical community typed and named the disease.
“I have the original strain,” said Jones, who has resided in Somerset County for more than 20 years.
Amanda Skibicki of Huntingtown explained that she has recollection of being bitten by tick. However, in 2010 she was under the care of Dr. Rafik Nasr, a family practitioner whose office was in Lusby. During a visit, Skibicki was diagnosed with Lyme and also found out she was pregnant. Nasr, who died in 2014, had a reputation for being one of the few doctors willing to treat chronic Lyme, doing so despite pressure from health insurance regulators not to do so.
Skibicki was on antibiotics during her pregnancy. With antibiotics no longer effective, Skibicki, who still has back flare-ups and joint pain, is using cryotherapy, a freeze treatment. “It’s pretty cool and it does help,” said Skibicki, who added she has also tried acupuncture.
Hudson reported that it was over a decade after her tick bite before she finally tested positive for Lyme disease. Antibiotic treatments had no long-term impact. When the symptoms reoccured in 2008, Hudson recalled, “it was horrible. I started going to doctors and they said there was no such thing as chronic Lyme, and it was all in my head.” After another severe recurrence of symptoms in 2015, Hudson started holistic treatments from a doctor in Anne Arundel County. “Within two weeks I was back to normal,” said Hudson. “I hope that this is the end of my story but no one knows for sure.”
Jane Benitz of North Beach said due to being allergic to antibiotics she now goes to a licensed provider for herbal treatments. Benitz said these are costly treatments “all paid out of pocket.”
“I was misdiagnosed for eight years,” said Brittany Goff, the director of clinical services and psychotherapy for the Rockville-based Lyme Disease Counseling LLC. Goff recalled being bitten by a tick at age 5, having the telltale bull’s-eye on her skin and being treated. During her teen years, however, her fatigue, physical pain and behavioral problems were not attributed to Lyme. She saw several doctors and all lab tests were negative. “I didn’t know my Lyme disease was reactivated,” said Goff. “Lyme can remain dormant for years. You’re never cured. It really does screw with your brain.”
Goff said the Lyme disease bacterium can effect one’s central nervous system. There it mimics maladies such as multiple sclerosis and bipolar disorder. After being treated with antibiotics and steroids, Goff said the symptoms went away. “It was all the Lyme attacking my brain,” she stated.
Goff decided that she would aid others who were impacted by Lyme. “I’m helping people navigate though it,” she said. “It is so misdiagnosed.”
According to Prince Frederick physical therapist Yvonne Remz, both the CDC and National Institutes of Health put limits on antibiotic treatment. Also, Remz said the test kit IGeneX, believed by many to be the most accurate test in diagnosing Lyme and other co-infections “is not condoned by the CDC.”
Calvert County Health Officer Dr. Laurence Polsky said it’s crucial for residents of rural communities to know how to take precautions. While the culprit is commonly called a “deer tick,” Polsky explained that all warm-blooded creatures carry ticks. Merely treating your pets for ticks does not remove the concern for the humans in the household. “Pet medications don’t kill ticks immediately,” Polsky said.
Additionally, no one should be reluctant to apply repellants to skin and clothes from May to October, when the area is teeming with ticks. Remz said applying DEET to one’s skin and a spray solution called Permethrin on clothes is recommended protection against the ravages of ticks. Permethrin is known to actually kill ticks. Remz said for added protection, when returning from outdoors, remove the clothes you were wearing and run them in the dryer. That will also kill ticks and prevent them from infesting your home.
Last summer state health officials announced a National Veterinary Services Laboratory test confirmed the presence of a longhorned tick, also known as the East Asian tick, in Washington County.
“The discovery of the longhorn tick in Maryland reinforces the need of residents to practice tick prevention methods,” Maryland Department of Health Public Health Services Deputy Secretary Dr. Howard Haft stated in a press release. “Avoiding wooded and brushy area, wearing long pants and long sleeves, using repellant, and performing tick checks after being outside will help prevent tickborne illnesses.”
The Calvert County Health Department website advises that should you find a tick on you remove it right away using tweezers to grip the tick behind its head as close the the skin as possible. Pull the tick’s body away from your skin. Be sure to wash your hands with soap and water after handling the tick. Clean the tick bite with antiseptic. In about 30 days a bull’s-eye skin inflammation may appear or symptoms could develop.
Polsky said it is crucial to contact a health care provider 72 hours after contact with a tick. A single dose of antibiotics could lead to the prevention of Lyme disease.
In addition to aiding Lyme patients with the navigation of the treatment process, Goff has also lobbied state legislatures to pass measures to help individuals saddled with a devastating illness that’s tough to diagnose and treat, and has to be paid for by patients out of pocket. Legislation in Annapolis last year to require health insurance companies to allow physicians to dictate patient treatment for Lyme failed, but advocates pledge to be back next year. “We want the doctors to determine the treatment, not the insurance companies,” Goff said.