‘You’re not treating an ear infection, you’re treating a possible brain infection’
— Diane Blanchard, Time for Lyme
More than thirty years after Lyme disease was identified in the eastern Connecticut town for which it was named, more than twenty years after public-health researcher Willy Burgdorfer discovered the bacterium that causes Lyme, and four years after Connecticut found itself with the undesirable distinction of having the second-highest incidence of the disease in the country, there is still no reliable test for the dreaded illness, and no surefire cure.
So, in a largely wooded state with increasing encroachment upon deer habitats and an exploding deer population, all optimal conditions for ticks to flourish, the only effective tool against contracting Lyme is prevention.
Prevention? For active people facing a glorious Connecticut summer, this might seem to be not enough. Indeed, the state’s Department of Public Health has just announced that the disease has increased by 34 percent in the last year. And everybody knows somebody who is suffering badly right this minute.
That’s why, after appraising the myriad issues surrounding this disease, Diane Blanchard, copresident of the advocacy group Time for Lyme, said, “If anything, things are worse than ever before.”
So what’s holding things up? For one thing, it’s an elaborately tricky disease.
Why so hard to diagnose?
The corkscrew-shaped bacterium that causes Lyme, Borrelia burgdorferi, possesses an ingeniousness that would be applauded if it weren’t also so perverse. This microscopic organism is transmitted to humans most often through the bite of a young black-legged deer tick that is barely bigger than a pinprick at the time of year — late spring to midsummer — when people wear summer clothes.
Delivered through the tick’s painless bite, the bacterium’s only distinctive visible manifestation is an expanding red rash, most commonly in the shape of a bull’s-eye. Known as an erythema migrans (EM), the rash is absent in anywhere from one-fourth to one-half the people who become infected.
This bacterium, called a spirochete, can enter the bloodstream as soon as twenty-four hours after attachment, carrying with it other tick-borne diseases, such as babesiosis and ehrlichiosis. Once in the blood, it can infect several body systems simultaneously, and because it can change form in different phases of its life cycle, it has a devious ability to circumvent a person’s immune system, avoid detection, and evade destruction. It produces an exhaustive array of constitutional, musculoskeletal and neurological symptoms — all of which can fluctuate.
Once it enters the body, it can lay dormant for months, even years, before unleashing its various forms of havoc, rendering those patients the hardest to treat.
Why is testing problematic?
Remarkably, there still is no reliable way to quantify Lyme infection. The two most common tests, the ELISHA and the Western Blot test, only detect the levels of antibodies produced by the body to combat the disease. These antibodies may take anywhere from two weeks to six weeks after infection to appear in the bloodstream, so by the time a blood test can identify the presence of the disease, it may already have been disseminated.
Further, the ELISHA test is considered accurate just 30 percent to 60 percent of the time. The Western Blot is the more precise test of the two, accurate 80 percent of the time, but it is useful only six to twelve weeks after infection. Plus, the criteria for a positive Western Blot test remain in dispute in the medical community. According to the federal Centers for Disease Control and Prevention (CDC), five positive protein “bands” of different colors are required for a positive result, but some doctors believe certain bands are more specific predictors of the disease, warranting treatment even if only one band is detected and a patient exhibits Lyme symptoms.
Among the more specific tests is the polymerase chain reaction (PCR) test, which, if administered early enough, may determine whether an active Lyme infection is present. Brain MRIs and brain SPECHT tests are useful when neurological symptoms are present.
The bottom line, though, is that there are no new tests on the horizon.
“The fact that there is no reliable test is partly the fault of the priorities,” says Dr. Ken Liegner of Armonk, New York, a Lyme specialist with many patients from Fairfield County. “Some very fine scientists have developed better tests, and they’ve been mothballed for reasons that defy me. It’s like some people don’t want to know.”
Further complicating the issue is which testing levels a doctor uses and which labs are used to conduct and interpret the tests, since different labs have different protocols. “One group of physicians uses certain labs, and another group uses other labs. So each clinician believes in their own labs and completely ignores the other side’s labs,” says Dr. Liegner. “Ultimately, you have to do a therapeutic trial to see if the person improves, and follow whatever objective markers you might have. It’s a clinical judgment.”
No effective treatments?
If Lyme is caught early enough, there are treatment options. Early-stage Lyme disease is characterized by the distinctive EM rash, although it appears in just 25 percent to 50 percent of those infected. Virtually all doctors agree that if antibiotics are administered before flulike symptoms appear — though they differ on the duration of treatment — the disease can be successfully treated.
But once the infection spreads to other parts of the body, in what is known as the dissemination stage, symptoms can range from chills and fever to muscle and joint pain, severe headaches, and fatigue. If untreated or mistreated, they can become a persistent infection. Complicating treatment is that some symptoms may not appear until weeks, months or even years after a tick bite.
What’s the controversy?
Dramatically coloring the diagnosis and treatment of Lyme today is a fierce, often bitter debate in the medical community. More than one person has characterized it as a “war.” It boils down to different standards of care, and even diametrically opposed definitions of the disease, leaving Lyme sufferers and those with Lyme symptoms wondering what to believe, whom to trust and where to go.
One faction, represented by the International Lyme and Associated Diseases Society (ILADS), believes the mainstream medical community is too conservative in its treatment of Lyme, and that new guidelines for diagnosis and care are necessary. These physicians, whom advocates have come to refer to as “Lyme literate,” assert that Lyme should be treated with high doses of antibiotics until all symptoms are resolved and, usually, at least two months beyond that, to be sure the disease is eradicated. They believe the myriad and debilitating effects of the Lyme infection far outweigh the potential consequences of the medications. In cases where Lyme was initially untreated or remains persistent, they typically prescribe high doses of antibiotics for, on average, six to twelve months.
The other camp, comprising of physicians and scientists belonging to the 8,000-member Infectious Diseases Society of America (IDSA), believes Lyme should be treated with a limited course of antibiotics, typically not more than twenty-one days.
Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at Yale Medical School, who helped develop IDSA’s treatment guidelines, communicates the mainstream position clearly. “It’s a myth that Lyme is this horrible, terrible disease that’s difficult to treat,” he says. “More than 95 percent of the people with Lyme disease are treated and cured.”
The Lyme literate don’t agree. ILADS doctors say Lyme that is misdiagnosed or untreated early, in particular, can progress into a serious, debilitating illness, especially affecting the central nervous system. This is called “chronic Lyme.”
Mainstream doctors point to IDSA guidelines, which state that subjective complaints that arise after Lyme has been treated appropriately could merely be residual infections. Regardless, these should not be treated with repeated or prolonged courses of antibiotics, since the IDSA claims there isn’t sufficient evidence to regard chronic Lyme as a separate diagnostic entity.
“What Lyme isn’t, is a chronic, intermittent disease with nonspecific symptoms like fatigue, aches and pains, and headaches,” Shapiro says. “Do people with Lyme get those symptoms? Sure, but a lot of other people do, too.”
Dr. Brian Fallon snorts at that. “When someone says chronic Lyme does not exist,” says the noted researcher, who has studied the neurological and psychiatric manifestations of Lyme disease at Columbia-Presbyterian since 1991, “that really belies the evidence.”
Caught in the middle of this controversy are patients such as Yolande Casey of New Canaan, who’s been battling the effects of Lyme since April 2005. “The big problem with this disease is many of the mainstream internists are nonbelievers in Lyme, who tell you that you shouldn’t go to ‘Lyme quacks.’ If I heard that once, I heard it a thousand times,” she says. “The toughest thing for people with Lyme is going from doctor to doctor.”
Are antibiotics effective?
Both sides in the Lyme debate believe antibiotics are the first step in treating the disease. However, what dosage to prescribe and for how long largely remains a trial-and-error process. “There are no universally effective antibiotics for treating Lyme,” says Dr. Joseph Burrascano Jr. of East Hampton. Which medicine to use and in what dosage depend on a host of factors, such as the duration and severity of the illness, the presence of coinfections from the same tick bite (requiring different treatments), and the age and weight of the patient.
Another factor complicating treatment is that there are more than 100 strains of the Lyme bacterium, all of which vary in their antibiotic susceptibilities. Further, there are forms of Lyme that change over time, requiring a change in treatment or a combination of treatments.
That’s why Dr. Steven Phillips of Ridgefield, one of the foremost Lyme specialists in the state and a past president of ILADS, says, “Ask ten different doctors about Lyme and you’ll get ten different answers.”
Dr. Shapiro and the ILADS community believe that unless a patient meets the Centers for Disease Control’s strict criteria for diagnosing Lyme, antibiotics should not be prescribed prophylactically or beyond the standard course of care. Why? He cites “plenty of downsides: It’s expensive, and there are side effects like diarrhea, gallstones and infections of the heart valves. If there’s no benefit, only risks, there’s no sense to doing it. And based on the scientific literature, there is no evidence that long-term antibiotics, beyond the standard course of treatment, helps.”
Dr. Phillips counters that as a youth he was prescribed tetracycline to prevent acne “and no one ever said, ‘Boo.’ Yet with Lyme, it’s still controversial to be treated with antibiotics for more than a month. For the sicker patients, it shouldn’t be controversial at all.”
Since the mainstream IDSA community does not believe that chronic Lyme exists, treatment for patients who were initially misdiagnosed or who were treated too conservatively falls to the Lyme-literate doctors, who have come to employ increasingly aggressive methods to mitigate the disease.
Intravenous antibiotics are one course of action, but in addition to being costly and cumbersome, they raise the risk of infection. Still, when Lyme is at its most ravaging, as it was with Brooke Landau, patients may embrace even experimental treatments.
A Ridgefield native, Brooke was a year out of college and living in New Canaan in 1995. One day she woke up unable to move from the waist down and the neck up, the effects of a tick bite five months prior. Among a host of crippling symptoms, severe joint pain forced her to move to a warmer climate in 1996, and it was in Miami where she underwent invasive procedures to combat one of the worst cases of Lyme documented.
A tube was inserted into her chest so antibiotics could be pumped into an artery leading directly to her heart, a dangerous treatment that lasted two months. “One infection there and you’re done,” she says.
While she was undergoing that treatment, she also spent ninety minutes a day for thirty straight days in a hyperbaric oxygen chamber, which enabled the antibiotics to penetrate more deeply into her infected tissues and cells. After her next to last treatment, she was still in constant pain, but after the thirtieth day, her joint and muscle pain began abating, her hearing and sight improved, and her short-term memory returned. “I truly believe I would not be here without that treatment,” says Brooke, now back at work as a broadcast journalist and producer. Although functional, she remains afflicted from her original battle with Lyme and associated coinfections. “I haven’t had a second in ten-and-a-half years without a headache,” she says.
Dr. Bernard Raxlen of Stamford, who specializes in the neuropsychiatric and neurocognitive symptoms of Lyme, calls nutritional therapeutics “a critical component” of his treatment program. Antibiotics, especially over time, can suppress the immune system, so nutrients in food and supplements can build the antibodies necessary to combat Lyme.
Jim Nasseta, a commercial photographer, videographer and contractor in Easton, first contracted Lyme more than ten years ago. Nasseta had been plagued by joint pain and neurologic symptoms, despite antibiotic treatments, until he was steered to nutritional supplements five months ago.
Now he swears by a regimen of Noni juice, derived from a fruit found on one island in the South Pacific near Tahiti; grapefruit-seed extract; and colloidal silver, which he credits with beating back the bacteria in his body and strengthening his immune system.
“I went through hell with antibiotics,” he says, “but in the last few months my life has changed drastically. I’m getting back to the person I used to be.”
Who is most at risk?
Children are far more vulnerable than adults to acquiring Lyme because they are outside more often and physically closer to the ground, where deer ticks reside. Also, their soft, thin skin is more easily penetrable by the deer tick. Moreover, children are less experienced in handling or articulating various and variable symptoms. Left untreated, these can cause cognitive difficulties, even impairment.
Debbie Siciliano and Diane Blanchard are virtually joined at the hip as copresidents of Time for Lyme (TFL), which began as the Greenwich Lyme Disease Task Force (GLDTF) in 1998. They met in June that year at a Greenwich public health forum on Lyme, a time when Debbie’ seven-year-old son began exhibiting Lyme symptoms and Diane’s three young children, including twin daughters, were experiencing a variety of health problems.
Their experiences, along with those of a handful of others, led to the launching of GLDTF, whose objective, through education and fundraising, was to encourage the development of more effective treatments and promote research on chronic Lyme.
The group changed its name to Time for Lyme in 2000, when it became an affiliate of the national Lyme Disease Association.
One-quarter of all reported Lyme cases are in children, and according to CDC statistics, from 2001 to 2003 the five to fourteen age group had the highest incidence of Lyme, at 9.9 cases per 100,000 population. That’s why Debbie is practically militant in recommending that kids get treatment early.
“You’re not treating an ear infection, you’re treating a possible brain infection,” Diane says. “If you look at it that way, why wouldn’t you treat with antibiotics?”
Dr. Charles Ray Jones of Hamden is perhaps the foremost pediatric Lyme specialist in the United States, having treated more than 7,000 children over the past three decades. Specific treatment varies on a case-by-case basis, but what he called “the mainstay” of his treatment is various combinations of antibiotics, the duration determined by clinical response.
Dr. Jones didn’t see David Huston of Greenwich, eleven years old at the time, until two months after the onset of his Lyme symptoms in late 2003. By then David had seen fourteen different doctors, “and not one of them diagnosed Lyme disease,” says his mother, Linda. The worst of his symptoms were sharp pains in his head that he likened to being stabbed, along with “popping” sensations.
Dr. Jones diagnosed David with Lyme in January 2004 and immediately started him on a regimen of intravenous antibiotics that lasted almost five months. After his symptoms had completely abated, David went off antibiotics in December 2004, fourteen months after the disease hit. His health is fine now, but the memory of how Lyme made him feel remains vivid.
“It was like having the fires of hell burning in you,” he says, “and seeing everyone else is fine, and being confused and depressed about it.”
The good news?
For starters, there is the proliferation of organizations like Time for Lyme and support groups across the state and the country. “Are we making a dent? I’d like to think so,” says Debbie. “But so many people are still falling through the cracks because the information isn’t getting out there fast enough. We’ve got to fill that void by educating people.”
There are no new vaccines on the horizon, “but hopefully there will be better diagnostic tests in the future,” says Dr. Shapiro. “And awareness of co-infection will be helpful.”
Debbie and Diane are encouraged by bills introduced in Washington in the House and Senate last July that authorize $100 million for Lyme research, education and prevention over five years. The legislation specifically directs the Health and Human Services Department to develop an accurate diagnostic test, explore the effectiveness of different treatments and establish an advisory committee that represents the spectrum of opinion on Lyme.
That last component is particularly important to TFL’s copresidents, since they believe the absence of consensus is preventing patients from getting proper care.
“The language in the bill is critically important to developing a multipronged approach to dealing with Lyme,” says Diane Blanchard. “We’re not saying the mainstream is wrong. We just want all the parties at the table.”
Dr. Mainstream, meet Dr. Lyme Literate.
The bills, though, need more sponsors before committee action can be taken. The problem is that Lyme is still regarded as a regional disease — a difficult perception to alter since 75 percent of the cases reported to the CDC from 1994 to 2003 were from four states: Connecticut, New York, New Jersey and Pennsylvania.
That’s also why, although it con-stitutes 95 percent of all vector-borne diseases, Lyme received just 6 percent of federal funding for these diseases in 2005, down from 10 percent in 2003. The trend troubles Lyme advocates, who suspect it is related to the ways numbers are reported.
Still, national politicians are finally taking note. Senators Charles Schumer (D-NY) and Christopher Dodd (D-CT) have rushed to cosponsor bills that would expand federal efforts on behalf of tick-borne illnesses.
Another promising development is that TFL and the Lyme Disease Association are close to raising the $3 million needed to establish the first Lyme disease research center in the United States, at Columbia-Presbyterian. The center will support research already underway at Columbia-Presbyterian on chronic Lyme and dispense grants for research across the United States.
It can’t come fast enough. Remember young David Huston’s four-and-a-half months of treatment? Insurance only covered one month. The intravenous treatments cost $500 a day, plus there were weekly nurse visits and lab treatments. As his mother says, “This is a disease that can bankrupt families.”
For her part, Yolande Casey tells friends to look beyond finding a tick or any telltale rash and get help immediately. “If it goes untreated you have a long road ahead of you,” she concludes. “Lyme is a disaster of a disease.”