Touched by Lyme: One Woman’s Struggle with Lyme Disease

By Esther Shevel

She looks down into her coffee cup like it’s a crystal ball of some sort and shares her most youthful and sentimental moments with me, bringing up the days when she was able to dance the nights away with her girlfriends and enjoy her garden outside.

“I used to be president of the garden club,” she says, nostalgically.” Now I’m afraid of my own backyard… I won’t even let my dog walk on grass.”

In January 2011 Cheryl* was diagnosed with Lyme disease and Bartonella, an infectious disease also known as Cat Scratch Disease (CSD). Her bleeding gums and chronic fatigue had long signaled there was something wrong, but she wasn’t diagnosed and treated until after visiting a series of expensive and “untrained” doctors as she puts it, and undergoing many tedious sessions of blood work. When prompt effective treatment is unavailable, Lyme disease can dramatically alter people’s lives, as Cheryl’s case lays bare.

According to her doctor, Cheryl’s ability to function now depends on how well her immune system can meet the challenge of her infections. Her treatment revolves around strengthening her immune system, which requires eliminating some of her favorite foods and loading up on supplements such as fish oil, krill oil, probiotics, chlorella, zinc and grape seed abstract. A typical morning for Cheryl entails taking exactly 50 pills and a few prescribed herbal protocols.

After having had 30 vials of blood taken from her to identify any food sensitivities that may compromise her immune system, Cheryl was told to eliminate all foods that may contain any traces of sugar or caffeine. This means no more fruit or carbohydrates, leaving Cheryl with an extremely limited diet.

“At times you get really tired of being so restricted,” she says. With a guilty grin she admits to “being naughty lately.”

“I’ve been getting french fries lately or I’ve been adding jelly to everything, just so I don’t feel so deprived. I really need to stop.”

Cheryl has to use a cane to get around and must avoid stairs, due to the constant burning sensation in her feet and the chronic fatigue that keeps her from achieving simple tasks throughout the day. “A year ago I couldn’t watch my grandson, because I was so fatigued,” she says. Her other symptoms include obsessive thinking, anxiety, poor balance, body numbness, stiffness, lack of clarity, chronic fatigue, and muscle spasms.

Another struggle Lyme patients are faced with is dramatic mood swings. Cheryl along with other members of a Lyme support group in New Paltz, say that unbridled emotions seem to be the biggest issue for them. “You just never know when you’re going to break down in tears for no reason, “says Cheryl.

When night falls, sleep is nearly impossible without medications such as Benadryl and Ambien in her system, she says. Her convulsing limbs and the burning sensation in her feet keep her from getting a sufficient amount of melatonin.

The disease takes an economic toll as well. A consultation with one doctor cost her $1,500 out of pocket. Friends of hers have lost their jobs and marriages due to the illness, she says. Her own bill at the health food store where she buys supplements and herbal remedies for her condition comes to at least $1,000 a month. “People go bankrupt trying to treat themselves and survive the disease. The MDs lie to you, pretend you’re doing well, and meanwhile they’re taking your money and sending you to infectious doctors and dropping you. It’s a horrible feeling. It’s almost like you’re a biblical leper. They don’t care!”

But no matter how difficult her struggle has been, Cheryl says she refuses to identify and call herself a “Lymee,” which is what those whom are infected often call themselves. “I think it’s easy to call yourself that but I won’t identify with it!” she says.

Cheryl has recently embarked on a project that she had been putting aside. With her daughter away from home, she has taken it upon herself to repaint her daughter’s bedroom. “At times you feel like you’re never going to be able to kick this and get better but I’m hopeful, one step at a time.”

*Cheryl’s last name has been omitted by her request.

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