Tiny tick brings giant problems for thousands in state, region
Local residents tell of battles with often-confusing Lyme disease
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Kingston resident Beth Capen, shown with her dog, Libby, has battled Lyme disease since 2009; she's even halted her law practice to focus on her health.JEFF GOULDING/Times Herald-Record
What most people know — or think they know — about tick-borne diseases like Lyme disease could fit on the back of a deer tick.
And what its victims know about Lyme disease would fill a book — a book whose frustration and pain and hardship radiates out of its pages and into the lives of families and communities.
The statistics are daunting and the subject of great contention among those who suffer from chronic Lyme disease. These are three stories that illustrate the Hydra-headed sorts of suffering inflicted by a disease that science and the public is still struggling to understand and contend with.
Lyme disease rampant in mid-Hudson valley
New York state has one of the country's highest infection rates, with 51,936 cases reported to CDC from 2000 to 2010.
But the Centers for Disease Control estimates the actual number in the state may be 10 times as many. That means more than 520,000 men, women and children have been struck by the disease.
The mid-Hudson region has been a hotspot for Lyme for more than a decade:
• Orange County has had the most reported cases of any of New York's 62 counties for each of the past three years.
• Ulster County's case load ranks in the top seven every year. The scourge has spread westward in recent years.
• Sullivan County's case load grew from 34 in 2006 - mostly in the Wurtsboro area - to 221 in 2011.
-- Jeremiah Horrigan
'Blessed' with early diagnosis
Beth Capen of Kingston has spent most of her life deeply involved in local, national and international outreach efforts of the United Methodist Church, both as a lawyer and as a person of faith.
Hers has been a life devoted to helping others. Capen's not used to — she actually resents — having to focus on her own needs.
She's the inheritor of a staunch New England heritage that says you help yourself by pushing yourself past the troubles that life sends your way.
"It's always been 'up and at 'em' for me," she says.
But Lyme disease changed all that. Lyme disease has hijacked her life.
And, though the disease has forced her to halt her law practice and finally pay attention to her own needs, when she compares her condition to that of other victims she knows, she calls herself lucky.
Here is a partial list of what "lucky" has sounded like at various times to Capen, since being diagnosed with Lyme disease in 2009:
-- Pain in her eyes that feels "like two needles being stabbed into my brain." At one point, the whites of her eyes turned completely red.
-- The loss of her ability to talk or to form coherent sentences.
-- Exhaustion that has kept her bedridden for days on end.
She has to smile sometimes, with more than a touch of irony, when she wonders how she contracted the disease.
"I'm strictly a concrete and asphalt girl."
Capen says she can't imagine how other victims of Lyme who don't have supportive family and friends can survive a disease whose symptoms can be even more physically, economically and socially debilitating than hers.
Capen was blessed, she said, because she was diagnosed early and because she's been able to see improvement in her condition — and because she's learned to appreciate every moment of every day and that one day she'll find some meaning in the suffering she's had to endure.
First 2 kids, then mom
March Gallagher is director of business services for Ulster County. She has witnessed and endured some of the worst imaginable consequences of a disease that easily escapes diagnoses, tests and cures.
Gallagher knew, in an offhand sort of way, that she was living in an area of Saugerties where there was a high incidence of ticks. And she was alert enough to its presence that when she noticed a tick on the armpit of her six-year-old son, she had him treated and the infection was resolved.
Then, in 2005, her two-year-old daughter was bitten. She was given the same treatment. But the infection was not resolved.
For the next two years, her daughter suffered from debilitating and terrifying eye pain, joint pain, exhaustion, incontinence and night sweats.
Gallagher looked down the road and feared that her daughter might eventually be driven to suicide.
Desperate for help, Gallagher learned of a controversial Connecticut doctor revered by Lyme victims for his willingness to deal with their symptoms. The doctor diagnosed her daughter as having babesia, a potentially fatal tick-borne disease. He prescribed a drug used to combat malaria. Within 10 days of treatment, her daughter was "100 percent."
"Until then, all the faces she used to draw were frowns," Gallagher remembered. "Now she was drawing smiles."
That was 2007. Not long after her daughter's happy ending, Gallagher herself began her own battle with Lyme disease.
Thinking back to when she first went to the doctor, saying she didn't feel well. She was told she was eating too many carbs.
Gallagher ultimately withdrew from a very active professional life, quitting the chairmanship of the county's Industrial Development Agency and shuttering her legal practice, concentrating on getting well.
She, like Capen, considers herself lucky because she was able to withdraw from the workforce and because she could rely on her husband's continued financial and emotional support. It was a two-year struggle, "but now I'm back," Gallagher said.
She's also moved her family from the Saugerties neighborhood where she and her children contracted the disease.
"There are huge legal, medical and medical technology issues," she said. "And that's not to mention the mental health issues that accompany the disease."
Physical, mental 'terror'
Like more than 50 percent of Lyme victims, Rick Vanden Heuvel doesn't remember being bitten by a tick. The disease started manifesting in the dead of winter six years ago. It continues to be a presence in his life to this day.
Vanden Heuvel loves the outdoors. He lives in a modest house in Rosendale and makes his living as best he can — as best that nature and Lyme disease allow — as a professional gardener.
Many of the symptoms he experienced are familiar to other Lyme victims — chest pains, brain fogginess, Parkinson's-like muscle spasms and heart palpitations.
But the worst of it was the "absolute terror" he felt psychologically.
He became convinced he was dying. The feeling got so bad he sat his 8-year-old son down and told him, "If anything happens to me, you'll be the man in charge."
Because he said he has a scientific frame of mind, Vanden Heuvel has taken an analytic approach to the disease and how to live with it.
He's also convinced that the frustrations Lyme victims experience in getting medical help, and insurance companies to pay for that help, reveals how broken the medical system is.
He notes that the Connecticut doctor who was instrumental in helping Gallagher's daughter recover, Dr. Charles Ray Jones, has been hounded by the state's medical board and has paid a fortune in fines and legal costs over the years.
His patients and supporters frequently fundraise on his behalf. "Imagine holding a cookie sale for a doctor," Vanden Heuvel said.
But conditions are that topsy-turvy for many victims of chronic Lyme disease.
Thousands of patients, faced with health insurers that refuse to reimburse doctors for expensive therapies the companies don't accept, wind up paying thousands of dollars out-of-pocket for the chance to find relief.
Vanden Heuvel, who doesn't have health insurance and whose wife is a month away from losing hers, has found some relief through herbal remedies that cost him hundreds of dollars, instead of thousands.
It's a puzzle, he says. Some days are good, Some aren't so good.
"I just deal with it as best I can, every day."
Support group
The Mid-Ulster Lyme Support Group meets from 7 p.m. to 8:30 p.m the fourth Wednesday of every month at the Hudson Valley Sudbury School, 84 Zena Road, Woodstock. Call 705-2622 for information.
