With pickets raised and candles lit, Lyme disease patients and advocates stood in front of The New York Times building in New York City for a silent vigil on September 17, 2014. Participants from around the country joined to help raise awareness for the lack of media attention and research funds both needed to effectively treat and cure the degenerative disease that some call an epidemic.

Holding a lit candle and proudly wearing a green bandana around her left arm—the colour green represents Lyme—Patsy LeBlanc felt lucky to be standing among others advocating on behalf of the disease.

“My whole family is suffering from Lyme disease, so I’m here representing them,” said LeBlanc, who travelled from Texas. “I’ve been suffering from Lyme my whole life because I was born with it. I feel proud that I was able to come and give my support.”

While LeBlanc has been suffering from Lyme since birth, many patients are diagnosed several years after contracting the bacterial disease, as laboratory tests miss approximately 44 percent of cases. Being born with Lyme disease could also indicate an undiagnosed condition in the mother, as carriers of the tick-borne bacteria can live decades without receiving a diagnosis.

But not everyone in the medical field believes this to be true. American public health authorities claim that research has not proven the bacteria can be transmitted to a developing fetus. However, many health practitioners who specialize in Lyme disease admit that they have seen evidence of gestational transmission.

Though this issue remains a polemic one, high rates of misdiagnosis and undetected cases were at the forefront of the September vigil. Participants hoped to bring more attention to Lyme patients’ conditions as well as to the government’s role in providing more viable research and treatment.

Woman protester holding a board that reads Lyme Disease - easy to get, hard to cureAs vigil participants set up wheelchairs along the sidewalk, it wasn’t hard to see what was really going on among those patients. Within half an hour, many people passed their lit candles to the person next to them and slowly seated themselves in an available wheelchair. While some participants endlessly moved around the crowd, carrying signs with a variation of messages, including “Lyme Disease: Everyone is at Risk” and “Lyme disease is pandemic; people need to know,” many slowly stepped out of conversations to find somewhere to sit, demonstrating some of the daily struggles for those living with Lyme.

Katherine Coolidge, a diagnosed Lyme patient, has experienced the severe symptoms of Lyme at their worst. “My legs were wet spaghetti. I couldn’t walk and I couldn’t stand, so I was in a wheelchair. Then, I couldn’t eat, and then, I couldn’t speak,” said Coolidge, who suffers from a co-infection called babesiosis that mimics malaria. “I went from being a very healthy, active woman to a wet noodle who couldn’t do anything.”

A Massachusetts resident, Coolidge sought out answers from doctors in the Boston area, but they failed to determine exactly when she had been bitten by the tick and were not able to relieve the degenerative effects of her co-infection. After visiting En Vita Medical Clinic in Arizona, Coolidge received a combination of chemical and natural treatments, which helped to treat her as well as many other patients suffering from a range of autoimmune diseases, including cancer.

A recommended ingredient for Coolidge was sea salt, which she finds the most of in her Himalayan pill—a completely natural supplement made from the earth. “It’s actually from the Himalayas,” she smiled. “Pretty cool, huh?”

Himalayan Salt contains 84 essential minerals and elements that were provided, at one time, through vegetables grown in rich soil. As opposed to table salt, which is chemically modified, natural sea salt has been known to kill unhealthy types of bacteria and parasites.

Written in green marker, 17 names stretched across Coolidge’s white T-shirt, setting her apart from the all-black dress code. Unzipping her sweater for a clearer view, Coolidge said each name represented a friend from home who is currently suffering from Lyme and was not healthy enough to participate in the vigil. “This way, they’re here with me,” Coolidge smiled.

As the vigil progressed, a silent Butoh performance—a Japanese art form that represents the resistance of a fixed state or mentality—made a stark contrast against the protesters in black by wearing all-white attire. Standing next to a fellow patient or resting in a wheelchair, participants watched the performance in silence, gazing at the dancers’ long, intricate movements—body motions that Lyme disease disallows for some patients.

After two years of treatment in Arizona, Coolidge has recovered from Lyme’s debilitating effects, but continues to stay healthy by following rigid diet constraints and wholistic health practices. “I take a lot of natural things given to me by the clinic,” Coolidge said. “When I first started this two years ago, I would take over 100 pills just to kick my body into gear.”

by Stephanie Grella
image: Adult female tick – Ixodes ricinus via Shutterstock