In December, Aiken musician Jesse Colin Young released a final cut of his song, “LymeLife,” which expresses his struggles with chronic Lyme disease, or late stage Lyme.
What causes Lyme?
“Lyme disease is caused by a spirochete – a corkscrew-shaped bacterium called Borrelia burgdorferi,” the LymeDisease.org organization said. “Lyme is called ‘The Great Imitator,’ because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints and the heart.”
One source of Lyme disease is the white-footed mouse.
“The mouse gets infected. The tick eats from the mouse, and the people get eaten by the tick. The tick then eventually injects the … Borrelia into the person that might get bitten,” said Dr. Gerald Gordon, an infectious disease physician with Internal Medicine Associates of Aiken.
The blacklegged tick, or deer tick, is the primary vector in the U.S., according to Dr. Paul S. Mead’s Epidemiology of Lyme Disease article in the Infectious Disease Clinics of North America’s Lyme Disease and Other Infections Transmitted by Ixodes scapularis June 2015 journal.
“I don’t really know how long I’ve had Lyme disease,” Young posted on his Facebook in December. “I was bitten by ticks countless times (while) enjoying the woods and beaches of the Point Reyes National Seashore (in California) from 1967 until our house there on the Ridgetop burned to the ground in a forest fire in October of 1995. It wasn’t until 2008 that I began to suspect that I had been infected.”
Diagnosing for Lyme
“The majority of laboratory tests performed for the diagnosis of Lyme disease are based on detection of the antibody responses against (Borrelia) in serum,” Dr. Adriana R. Marques said in her Laboratory Diagnosis of Lyme Disease: Advances and Challenges article in the Infectious Disease Clinics’ journal. “The sensitivity of antibody-based tests increases with the duration of the infection. Patients early in their illness are more likely to have a negative result.”
Young started to associate his signs with Lyme disease as he read a “What Psychiatrists Should Know About Tick Borne Diseases” brochure that he received from his cousin Barbara Buchman, who works for the International Lyme and Associated Diseases Society.
“When reading that brochure, which came to me literally ‘out of the blue,’ I found myself thinking, ‘My God, this is my biography,’” Young said. “No one was talking about Lyme disease or seemed to know anything about it. Since my Ridgetop home … burned to the ground in a wildfire in 1995, (doctors) thought perhaps I was suffering post-traumatic stress.”
Young’s doctor in Aiken was the first person to see some traces of the disease in his blood.
“Most of the time (it’s asymptomatic),” Gordon said. “So the vast majority of people in parts of the world where Lyme disease is endemic, the large part of the people who have Lyme disease don’t even know it.”
Living with Lyme
“Lyme has many mental, as well as physical, symptoms. The lists are pretty extensive,” Young said. “I think I thought I was just getting old really fast, and my body and mind were breaking down at the same time. I was in a world of pain, severe joint and spinal aches, muscle weakness, numbness in my limbs, just to name a few.”
When it was first suspected Young had Lyme, a doctor put him on some medication that, at the time, was thought to be able to cure him.
“I have known people who were treated immediately after a tick bite, and they seem to be able to put the disease behind them,” Young said. “But those of us who have gone five or 15 or 20 years without being diagnosed cannot seem to reach remission no matter how many drugs we take.”
Buchman assisted Young once again in 2009, when she referred him to Dr. Richard Horowitz, a New York-based, board-certified internist who is a founding member and past president elect of the International Lyme and Associated Diseases Society.
“My original protocol contained three different oral antibiotics plus two helper drugs,” Young said. “It was pretty rough on my system, but I started to slowly get better. When my system needed a rest after a year, Dr. (Horowitz) switched me to several herbal remedies that helped me to maintain the progress I had made on my former antibiotic regimen while I prepared myself for the next round.”
Young’s life today, prevention
Young visits Horowitz about once a year but checks in with him via phone at least every two to three months.
The musician also has to do comprehensive blood tests monthly.
The chance of contracting Lyme disease in South Carolina is low, Gordon said.
In 2013, the reported incident rate was 0.7 per 100,000 people, according to a chart used in Mead’s article.
For those who do visit an area where Lyme disease is more prevalent or for those who just want to be more cautious, Gordon advises wearing long-sleeved shirts while doing your activities, mainly ones in wooded areas, and checking for ticks when you are finished.
Young is the former frontman of the 1960s band, The Youngbloods, and has a farm in Hawaii with his wife Connie, where they produce certified-organic Kona coffee.