Valerie Zehl Neighbors: Lyme disease diagnosis
proved a hard-fought battle
April 28, 2010, 5:30 pm
Eight months pregnant with her third child, Julie Antenucci glanced in the mirror while getting ready for an appointment with her obstetrician. She brushed away a black dot on her belly — but it didn't move. To her horror, she realized it was a tick deeply embedded near her navel.
She developed the tell-tale bull's-eye at the site. Three weeks of antibiotics was prescribed, a quantity she would later learn was woefully inadequate for the five diseases the tick had transmitted to her: borreliosis (Lyme disease), bartonellosis, babesiosis ("malaria of the Northeast"), anaplasmosis and mycoplasmosis.
Her newborn, infected with three of those diseases in utero, was put on intravenous, then oral, antibiotics and suffered no further ill effects.
But for Julie, that tick bite in 2003 precipitated years of deteriorating health and skyrocketing medical expenses as she and husband Ugo, who lived in Maryland at the time, tried to convince their insurance company and doctors she was suffering from the tick-borne maladies — while those professionals tried to convince the Antenuccis that Julie was faking her symptoms or had a psychiatric disorder.
"I have been laughed at, shrugged at, ridiculed and kicked out of hospitals and medical offices," Julie explains. "I will never trust an institution that follows ISDA (Infectious Diseases Society of America)
Lyme disease guidelines again."
Some symptoms mimicked those of multiple sclerosis and arthritis, another had her going rigid and able to hear but unable to speak or react.
By the time symptoms were finally controlled only months ago by a doctor following International Lyme and Associated Diseases Society (ILADS) guidelines, she and Ugo had spent about $100,000 out of pocket.
Now the Antenuccis, who live in Endicott, are experts on the subject of tick-borne illnesses — and want to use their hard-won knowledge to caution everyone they can. "Lyme disease is at the same point AIDS was in the 1980s," Ugo says. "It's marginalized. Doctors poo-pooed it."
They say many doctors are uninformed about appropriate treatment and are unable even to correlate symptoms to their real cause. Insurance companies also don't understand the longstanding crippling effect the diseases can have, so they routinely reject payment for extended treatment. The few physicians who specialize in tick-borne diseases generally don't deal with insurance companies anyhow, but have long waiting lists.
And few people realize how dangerous a tick bite can be, the Antenuccis continue. Now 43, Julie will never be able to work again and must take a handful of pills daily to keep her symptoms in check — all traceable to that one virulent tick.
In order to qualify for disability through Social Security, she needed a psychiatrist to attest that it wasn't all in her head.
"Ms. Antenucci has no psychiatric disorder," the report states. "She believes, and I would agree with her, that the diagnosis of ... depression was primarily financially based as an attempt by the insurance company not to pay for medical treatment for her Lyme disease."
Vindication in being granted disabled status was gratifying, she says, but nowhere near enough compensation for her years of physical suffering and the anguish inflicted by medical professionals who refused to believe her.
Dr. Schaller neither supports nor opposes this material.