Lyme disease: Struggle begins with getting clear diagnosis
Lori Ann St. Jacques, her husband, Phil Pichette, and Carl Tuttle have all been diagnosed with chronic Lyme disease. Miss Elizabeth, the cockapoo that belongs to St. Jacques and Pichette, was also diagnosed with the disease. Greg Kwasnik photo
BEDFORD -- It took six years, eight doctors, a psychotherapist and a naturopath before Lori Ann St. Jacques, of Bedford, finally discovered the source of her constant pain: chronic Lyme disease.
Over those six years, St. Jacques, a registered nurse, lost control of her life to a range of flu-like symptoms — aches, lethargy, intense headaches — that made everyday tasks such as driving impossible.
“Wherever we went, I laid down in the back of the car because I couldn’t sit up,” St. Jacques said. “Everything stopped. I couldn’t even go grocery shopping.”
The Granite State has the third-highest incidence of Lyme disease in the country, close behind Delaware and Connecticut. According to the Centers for Disease Control and Prevention, New Hampshire saw 75.2 cases of Lyme Disease per 100,000 people in 2009. The disease is most common in Rockingham, Strafford and Hillsborough counties.
Doctors who saw St. Jacques suggested she might have chronic fatigue syndrome, restless leg syndrome, or nothing at all. Eventually, St. Jacques ended up seeing a psychotherapist for nine months.
“Finally she said to me, ‘I can’t find anything wrong with you, and I’m going to refer you to a doctor that thinks outside the box,’” St. Jacques said.
That doctor, who St. Jacques calls “Lyme-literate,” diagnosed her with chronic Lyme disease. That diagnosis is unorthodox because the established medical community says there is no scientific evidence that chronic Lyme disease exists.
Lyme disease is caused by an infection resulting from the bite of a deer tick. People who are bitten can develop a bull’s-eye rash over the affected area, along with muscle and joint aches. In severe cases, patients can suffer arthritis, facial paralysis, an abnormally slow heart rate and other neurological problems.
According to the Infectious Diseases Society of America, Lyme disease should be treated with a short course of antibiotics — up to 28 days — soon after symptoms develop.
But St. Jacques didn’t develop a bull’s-eye rash, or at least she didn’t notice one, and the doctors she visited didn’t even mention Lyme disease.
That all changed when St. Jacques met her “Lyme literate” doctor, who tested for the disease and, against the recommendations of the IDSA, prescribed a course of long-term antibiotics to fight the infection.
St. Jacques’ story is not unique. Carl Tuttle of Hudson spent 12 years battling symptoms before he was diagnosed in 2008.
Since then, Tuttle’s wife and daughter have also been diagnosed with the disease, along with at least a dozen neighbors. Tuttle, St. Jacques and others meet monthly at the Greater Manchester Lyme Disease Support Group in Manchester.
“We’ve found 12 other individuals within a 500-yard radius of our house that all have Lyme disease,” Tuttle said. “It’s an epidemic here in New Hampshire, without question.”
In recent months, Tuttle and other advocates went to Concord to support HB 295, a bill that would prevent medical boards from taking disciplinary action against doctors who prescribe long-term antibiotics. That bill passed in the House in March, and was approved by the Senate on May 4.
Dr. Jodie Dionne-Odom,deputy state epidemiologist and an assistant professor of medicine at Dartmouth Medical School, said infectious disease specialists opposed the bill “because scientific data says that there is no benefit to giving long-term antibiotics for Lyme disease.”
If a Lyme disease patient isn’t cured by the usual three-week antibiotic treatment, the patient may be suffering from another ailment as well or be unresponsive to the treatment.
“There are some people who despite the treatment for Lyme disease, still have symptoms,” Dionne-Odom said. “We just havent figured out a way to make them better at this point. Its tough for the patients.”
Tuttle has been on antibiotics for 30 months, and says he feels significantly better, but still fatigued. St. Jacques is still in pain, and was told by her doctor that she would need five years of treatment.
Phil Pichette, St. Jacques’ husband, is also taking long-term antibiotics.
“You don’t feel like there’s an end. You feel like you’re traveling,” Pichette said. “You see the light, but it’s so far away, it looks like you need a starship to get there.”
The Greater Manchester Lyme Disease Support Group meets on the third Wednesday of every month at 7 p.m. at the First Congregational Church of Manchester at 508 Union St.
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