Boston Globe/June 1, 2005/by BELLA ENGLISH
Five years ago, when she began experiencing numbness and tingling, a stiff neck, and periodic tremors, Susan Mercurio of Hamilton was told she had multiple sclerosis. She asked for a second opinion, then a third. All three neurologists agreed: MS. At age 40, she was put on steroids. Her children were 9 and 15. The family was devastated.
The steroids wreaked havoc on Mercurio's body. She lost much of her vision and couldn't drive for a year and experienced cramps, excruciating pain, a frozen jaw, weakness, and limited ability to walk. "I just basically stayed in bed and cried," she says today.
At a friend's suggestion, she went to a fourth neurologist, who finally said that in addition to MS she had Lyme disease. By this time, the steroids had suppressed her immune system, letting the Lyme bacteria "have a party in my body," as she puts it. A Boston doctor prescribed a month's worth of intravenous antibiotics but would not renew the prescription. When the medication stopped, the symptoms returned.
Mercurio sought out a "Lyme literate" doctor in New York, who also diagnosed co-infections of bartonella and babesiosis and has kept her on antibiotics for the past 4 1/2 years.
But she is convinced that because of the initial misdiagnosis and steroid treatment, her illness has been resistant to treatment. "It gave the Lyme disease and other co-infections a chance to invade my entire body -- joints, heart, muscles." Her vision has improved, but she still can't see much out of her right eye.
Because of her symptoms and the cluster of cases in her town, Mercurio, 45, is shocked no doctor ever asked if she'd been bitten by a tick. "I didn't know much about Lyme or MS. I thought I had a pinched nerve in my neck and went to the chiropractor. That's where it all started."
An avid gardener, she had been bitten by a tick more than once, and deer often visit her backyard. Her daughter, now 20, and son, 14, also have Lyme disease, as does her husband.
Although Mercurio has improved greatly, Lyme has left its legacy. "I graduated with almost a 4.0 from college, and now there are some days when I can't even get through a book," she says. Finally, during a visit to her local internist last year, she asked him the question: "Do I have MS?" He told her what she'd long suspected: No, she did not.
"We all think doctors are God," she says. "But I wish they'd look at the whole picture and not just treat individual symptoms. People diagnosed with lupus, MS, and ALS need to do their own homework."
Today, she is treated by a doctor in New York, while her kids go to Connecticut. "It's thousands and thousands of dollars out of pocket. You just put it on your credit card. You do what you have to do to get better and get your kids better."
Her doctor has warned her about the dangers of reinfection. So these days, Mercurio will sit on her deck, but the yard she once loved to tend is strictly off-limits. Sewing and knitting, because of her eyes, remain problematic. She can no longer play ball with her son. "Lyme," she says, "has taken away everything I loved."