Katie never felt the bite that caused her to lose roughly four years of her life.
Nor did she ever see the tick that infected her body with the spirochetes that cause Lyme disease. In fact, she didn’t even realize she was getting sick until she began to lose her night vision.
“Actually, I’ve never even seen a tick before,” said the 26-year-old Schenectady mother, who asked that her last name be withheld. “How funny is that?”
There was nothing humorous about the condition that wreaked havoc on her life since 2005. Katie’s ailments kept her in bed for nearly 18 hours a day with fatigue, destroyed her short-term memory, gave her uncontrollable twitches and left her in an almost chronic state of pain.
The disease also left her doubting her own sanity. With no real identifiable reason for her symptoms, many physicians were convinced that the illness was psychosomatic, possibly brought on by stress.
“The nice ones would say they didn’t know what was wrong with me,” she recalled. “The not-so-nice ones would tell me I’m nuts.”
Lyme disease is a crippling bacterial infection often carried by deer ticks. If detected early, the disease can usually be treated effectively with antibiotics.
But Katie continues to struggle with what some doctors are calling chronic Lyme disease. While new cases of Lyme disease all but tail off during the fall and winter, some still struggle to cope with the long-term effects, which they say can last for months or even years.
The number of people suffering from long-term cases of Lyme disease has given rise to a pair of support groups in the area. The Capital Region’s chapter of the Empire State Lyme Disease Association was formed two years ago in Guilderland, while the Adirondack Lyme Disease Foundation formed earlier this fall.
But some doctors aren’t convinced that the long-term ailments Katie and others deal with are related to Lyme disease and even question whether these patients were ever infected. Physicians with the Infectious Disease Society of America, a 5,000-member professional organization, agree that Lyme disease can normally be eradicated with a 30-day dose of antibiotics.
These doctors don’t question whether the so-called chronic Lyme disease patients are suffering. But they believe they have other maladies, some that might not even be catalogued by modern medicine.
“When people tell you they have Lyme disease for years, you have to wonder what is really wrong with them,” said the society’s Dr. Larry Zemel. He has never seen a case that required more than 30 days of antibiotics in more than three decades of practice.
Niskayuna resident Yvonne Zahir doesn’t doubt that she’s had Lyme disease for nearly three years. The 66-year-old former nurse and counselor found the disease’s trademark bull’s-eye rash on her lower leg after staying at a friend’s house in the Catskills, where Lyme-carrying ticks are prevalent.
Shortly after the rash developed, Zahir’s doctor put her on the antibiotic Doxycycline for four weeks. The treatment worked at first, but Zahir suffered another tick bite the following year and again began developing symptoms.
After another six weeks of antibiotic treatment, she became so sick she could barely walk. Lab tests later showed that Zahir was suffering from Bartonella, another tick-borne illness; again, she was placed on high doses of antibiotics.
In 2008, she developed another bull’s-eye rash, this time on her shoulder. She said a biopsy of the original bite showed that she was suffering from three different tick-related illnesses.
Since that time, she’s spent months on a variety of antibiotics, with varying success. She said MRI scans of her brain showed lesions, another symptom she offers as proof of the chronic state of her Lyme disease infection.
“They say [30 days of antibiotics] will kill everything a tick will give you,” she said Friday. “Well, that’s erroneous.”
Like Katie, Zahir said she has protracted difficulties with her short-term memory. She is forced to carry a notebook with her at all times so that she can remember the pills she took and when she took them.
Compounding her illness are her medical bills. Each doctor visit costs her nearly $200, and the pills she takes cost more than $1,600 per month.
Unable to work, Zahir has found herself out of money and facing foreclosure on the modest home she’s owned for 20 years. She can’t afford cable or telephone service and relies on a friend to pick up her trash because she can’t pay.
“I just see it as an adventure I don’t have much control over,” she said.
Katie also found herself mired in debt during her four-year bout with illness. She’s spent more than $5,000 battling her ailments since the beginning of the year, all of which she placed on a credit card.
Now, after more than nine months of antibiotic treatments, she’s finally starting to feel normal again. She recently secured a full-time job and has begun exercising again — she was an avid runner before falling ill.
Both women find fault with area physicians for not knowing enough about Lyme disease and its long-term effects. Katie said her case was so advanced by the time she sought medical treatment that doctors failed to identify it as Lyme disease.
“By the time I got so sick, they said you’re too sick because Lyme disease doesn’t cause all this,” she recalled. “It wasn’t just one doctor or two doctors, because the majority of them said they didn’t know what it was.”
The number of long-term Lyme disease cases prompted Saratoga Springs resident Linda McAllister to help co-found the Adirondack Lyme Disease Foundation. She said she was afflicted with Lyme disease 20 years ago and finds a need to spread awareness about the illness so people like Katie and Zahir can receive proper treatment.
McAllister said a lot of the blood tests for Lyme disease rely on finding the antibodies that attack the bacteria. She said some cases can go undetected until the person’s immune system is so depressed that the antibodies aren’t present and therefore the blood tests come back negative.
“The sicker the person is, the less chance they’re producing antibodies,” she said.
Instead, she said, many Lyme disease patients get diagnosed with illnesses such as chronic fatigue, fibromyalgia and multiple sclerosis. Or worse yet, they don’t get diagnosed with anything, leaving the patient to question why they feel so sick.
The lack of a diagnosis sometimes means insurance carriers deny patients’ claims for treatment, McAllister said. Some people suffering almost chronic pain resort to spending thousands of dollars for medicine and doctor visits each year; those without money are sometimes left without options.
“These people are left chronically ill with no place to go,” she said.
Those who believe in the chronic nature of Lyme disease often fault mainstream medicine and organizations such as the Infectious Disease Society of America for failing to change the diagnostic guidelines; these guidelines are also accepted by the federal Centers for Disease Control and Prevention. Physician disagreements with the IDSA’s stance has given rise to the International Lyme and Associated Disease Society, a multi-disciplinary organization dedicated to restructuring the methods of diagnosing and treating the disease.
Dr. Daniel Cameron, the president of ILADS and an epidemiologist in Westchester County, said the issue boils down to a difference of opinion between two philosophies of treating the illness. But when the IDSA began denying the existence of chronic Lyme disease in 2000, he said many physicians and insurance carriers followed their lead.
“By having the insurance companies pick [the IDSA] guideline, then they essentially cut off access to care,” he said.
Cameron and doctors in support of reforming these guidelines are expected to convene for a conference in Washington this weekend. He said the goal is to push for a broader approach to identifying the disease.
“You need to have someone who looks at more than antibiotics,” he said. “You need to look at the whole picture to get somebody better.”
Not all physicians are convinced of the need to change these guidelines. Dr. Gary Wormser, an infectious disease specialist and a member of the IDSA, disputes the existence of chronic Lyme disease and faults the physicians who attempt to treat it, even if they have the most altruistic of intentions.
Wormser said some patients get frustrated by the lack of a diagnosis and continue seeking opinions until they get an answer. And he said some of the less-scrupulous blood testing companies from out of state are more than willing to provide that answer.
“Usually the patients that come in with these stories went to 19 doctors and had 17 tests that were negative, until a lab in California came back with positive results,” he explained. “I don’t blame patients for falling into this trap ... but the reality is it’s very hard to tell them that we don’t find any evidence of Lyme.”
He said patients who believe this diagnosis often end up taking antibiotics for far longer than recommended. In one recent case, he said an 18-year-old patient of his had taken antibiotics for nearly six years without ever testing positive for Lyme disease.
“We’ve never seen anybody that needs months and months of antibiotics,” he said.
Zemel said taking antibiotics for such a prolonged period of time could help create drug-resistant strains of bacteria, dangerous side effects or both.
“This is incredibly irresponsible,” he said.
Zemel said the explosion of people self-diagnosing on the Internet has caused a proliferation of misinformation about Lyme disease, which in turn has given rise to support groups. And while he doesn’t fault patients for seeking answers, he fears their belief in chronic Lyme disease may ultimately cloud what truly ails them.
“We’re distracting patients from what’s really going on,” he said.