Lyme that lingers
A professor pushes to change minds about a disease’s scope
By TRACY FRISCH
When Holly Ahern found out several years ago that her daughter’s mysterious illness was Lyme disease, she quickly immersed herself in the subject.
Ahern, an associate professor of microbiology at SUNY Adirondack, soon learned about the controversies swirling around the disease and came to realize that many others were suffering like her daughter, then a teenager.
At SUNY Adirondack, the community college based near Glens Falls where she’s taught for the past two decades, Ahern runs an undergraduate research lab. Students are able to work on real-life projects that prepare them for transferring to four-year institutions.
Now she is focusing her research on Borrelia burgdorferi, the bacterium that causes Lyme. Her recent findings suggest the possibility of a promising new avenue for treatment.
In addition to her work in the lab, Ahern has become an articulate advocate for developing a broader understanding of Lyme disease – one aimed at treating the chronic symptoms commonly reported by patients who were misdiagnosed or received inadequate treatment in the disease’s early stages.
Lyme disease, spread through the bites of infected deer ticks, is famously difficult to diagnose, in part because as many as half of patients don’t remember being bitten by a tick. Antibiotic treatments often work well in cases where the disease is caught quickly – such as in patients who develop the classic bull’s eye rash. But in other patients the disease may linger – and worsen – for years before anyone figures out they have Lyme.
The very notion of persistent or chronic Lyme symptoms, however, has been the focus of bitter division within the medical profession in recent years.
The Infectious Disease Society of America, the group sets the treatment guidelines relied upon by most doctors, has imposed what critics say is a overly restrictive definition of the disease. The group advises against treating Lyme with antibiotics for more than four weeks -- even in cases where symptoms persist. Some doctors and scientists in this camp go so far as to say that the chronic symptoms reported by many Lyme patients are imaginary or might result from other, undiagnosed conditions.
On the other side are a smaller but growing number of doctors and other medical professionals connected with the International Lyme and Associated Diseases Society. They argue that Lyme should be diagnosed clinically – the laboratory tests for the disease are notoriously unreliable – and that a longer course of antibiotics may be necessary in some cases to treat chronic symptoms. Doctors in this group are more apt to specialize in treating Lyme – supporters call them “Lyme literate” -- and they know to look for other, tick-borne co-infections that are associated with the disease. Their efforts, however, generally aren’t covered by health insurance.
Ahern’s experience with her daughter’s illness, coupled with her own research, has allied her with the latter group.
Last year, Ahern teamed up with Christina Fisk, a local business owner who also has a daughter with Lyme disease, to start the Lyme Action Network. The new group has already organized several educational events for Lyme patients, the general public and medical providers. The two women also put together an all-day Lyme forum, held in May at Skidmore College, that attracted more than 500 people and featured several prominent Lyme doctors as well a writer, lawyer and others involved with the issue.
Ahern’s daughter Kaleigh, now 22, was a highly ranked competitive swimmer in high school. But in her senior year she became ill with “a weird set of symptoms,” her mother recalled.
“She was exhausted but couldn’t sleep,” Ahern said. “She was dizzy and lightheaded. Her eyes hurt when she moved them from side to side. Her body ached, and she had intermittent swollen lymph glands and fever.”
At first she was diagnosed with mononucleosis. But she didn’t get better.
The next year, as a freshman on the swim team at Union College, Kaleigh developed ear pain, short-term memory loss and “brain fog,” Ahern said.
Frustrated at the lack of progress in treating these symptoms, Ahern said there was one week in which she took her daughter to her primary-care doctor every day. That same week, Ahern’s husband, a middle school teacher, happened to attend a seminar on Lyme. He thought it sounded like their daughter’s condition.
“Lucky for her, the Western blot test came back equivocal,” Ahern said.
The Western blot is one of the two tests commonly used for Lyme. Usually patients must first register a positive result on what’s known as an Elisa test. Both of these tests rely on the presence of antibodies, not the actual organism or other signs of the disease’s presence.
Although antibiotics helped Kaleigh, “they didn’t fix her,” Ahern said.
Her daughter had been sick too long and now had late-stage neurological Lyme, she explained.
In the middle of her sophomore year, Kaleigh came home for a year to try different strategies to get better. She switched to a doctor trained in the protocols of the International Lyme and Associated Diseases Society. There are only a handful of such doctors in eastern New York.
Since then, “it’s been a very slow uphill with some dips,” Ahern said.
After they realized that antibiotics alone weren’t the answer, Kaleigh turned to dietary and lifestyle changes that appear to have helped.
Looking back, Ahern now thinks her daughter contracted Lyme from a tick bite at age 12. Without flu-like symptoms or a bull’s-eye rash, the doctor didn’t prescribe an antibiotic. Kaleigh’s symptoms developed slowly and inexplicably over a period of years.
A widening menace
Statistics from state health departments show the Hudson Valley and southern New England are particular hot spots for Lyme disease, and even public health officials admit that the official statistics understate the incidence of Lyme.
Since it was first officially recognized after an outbreak in its namesake town of Lyme, Conn., in the 1970s, Lyme disease has been steadily spreading north and west through New England and New York, and there are now at least some documented cases in every state throughout the continental United States.
Over the past decade, the incidence of Lyme has increased dramatically in eastern New York. From 2007 through 2009, the latest years for which data is available from the New York Department of Health, Columbia County had the highest per-capita incidence of Lyme disease in the state, with a total of 1,474 cases over three years. In the same period, more than 1,300 cases were documented in Rensselaer County, with 897 in Saratoga County, 462 in Washington County and 134 in Warren County.
In Vermont, the number of reported Lyme cases increased from 290 in 2008 to 512 last year, with more than half of those in Bennington and Rutland counties.
And in Massachusetts, more than 100 cases a year have been confirmed in Berkshire County in recent years, with Great Barrington a consistent hot spot.
But the official statistics may greatly understate the incidence of Lyme disease.
Gail McNicholas, a Saratoga County public health nurse, agrees that there's a “huge” discrepancy between official statistics for Lyme disease and the real number of cases.
For one thing, only illnesses that meet the U.S. Centers for Disease Control and Prevention’s definition for Lyme are included in government health statistics. In New York, counties are charged with vetting all Lyme reports to see if they qualify. Every time a health care provider orders a Lyme test that comes back positive, they are faxed a simple form.
“But a lot of providers don’t return the form,” McNicholas said.
Without a report from the medical provider, Lyme cases cannot be counted.
Even so, McNicholas said her agency receives so many reports that they don’t have time to investigate all of them. Instead, the state randomly selects 20 percent of cases to follow up on.
Health care providers are required to report Lyme cases meeting the official criteria. A lab test is not required; a bull’s-eye skin rash is sufficient. Yet in her experience, McNicholas said, “probably a high percentage of physicians don’t report.”
In an example from Massachusetts, public radio station WBUR reported last month that in 2010, the number of confirmed cases of Lyme in Martha’s Vineyard was 25 – but that a survey of pharmacies on the island showed more than 1,000 prescriptions were issued that year for antibiotics to treat Lyme.
At the Saratoga forum in May, Ahern presented the results of her own survey suggesting that the prevalence of Lyme disease far exceeds the official statistics.
In 2009, the reported Lyme disease rate in Saratoga, Warren and Washington counties was 0.2 percent of the population. Yet among the 600 community college students, faculty and staff responding to Ahern's survey, 2 percent – or 10 times the official rate – said they had been diagnosed with Lyme by a physician and met the official criteria for the disease. Another 16 percent reported having symptoms of Lyme but hadn’t been diagnosed.
Ahern concluded that the actual incidence of the disease might exceed the official numbers by a factor of at least 10 and perhaps 80.
Breaking a barrier
Like syphilis, Lyme disease is a chronic, potentially deadly disease that progresses into various organ systems. For instance, both can infect and damage the brain and bones.
The two diseases are caused by related bacteria, called spirochetes after their corkscrew-like form. Members of this group of bacteria are infamous for shape shifting; thus disguised, they can hide from their host’s defenses, so that the immune system can’t reach and neutralize them.
Syphilis, however, is more susceptible to antibiotics than Lyme.
One of the reasons the Borrelia bacteria are so resistant to treatment, especially delayed treatment, is their habit of forming biofilm. According to Ahern, biofilm is a “slimy polysaccharide matrix” that serves as a sort of “city” for bacteria. Inside the protective haven of biofilm, bacteria can live and proliferate, safe from the harmful action of antibiotics and the host’s immune system.
After purchasing the Borrelia bacteria to study, Ahern was able to watch the organisms form biofilm. She photographed the process under phase contrast and light microscopes.
The biofilm phenomenon is recognized as a significant medical and environmental problem, and not just in Lyme disease. On medical equipment such as catheters, biofilm protects bacteria from disinfectants; it also frequency makes antibiotics ineffective in children's middle ear infections.
Some disease-causing bacteria make biofilm in the human body, but no one has yet figured out how to upset the biofilm to make the pathogens mores susceptible to antibiotics.
Ahern decided to investigate the potential for pulsed electric fields to disrupt Lyme disease biofilm. Different organisms respond to pulsed waves broadcast at different frequencies, she said.
“If you can figure out the right frequency, you can ultimately induce vibrations that turn out to be lethal,” she explained.
Working in collaboration with a Skidmore College professor, and with the help of her own students, Ahern found that specific wavelengths of pulsed energy appear to break down Borrelia biofilm. They presented their findings in May 2011 at the general meeting of the American Society for Microbiology in New Orleans.
But Ahern soon got a taste of the bitter divisions within the scientific profession over Lyme disease.
When the company that had sold her the Borrelia culture announced a photo contest, on a lark Ahern entered one of her biofilm photos and invited her students and friends to vote for her entry. Last she checked, her photo had received the most votes.
“People put it on Facebook, and someone sent it to LymeDisease.org,” she said.
In mid-June, however, an anonymous blogger using the name Relative Risk posted disparaging remarks about Ahern, calling her “a SUNY professor trying to stack the ballot box.”
The blogger continued threateningly: “I wonder how the tenure committee feels.”
Ahern, who received tenure about 15 years ago, says she wasn’t intimidated, however.
“All I do is teach microbiology to health and science majors,” she said, explaining that she doesn’t compete for research grants.
With a little investigation, she came to believe that the owner of the Relative Risk blog is a microbiologist who asserts that there’s no such thing as chronic Lyme disease. An associate told her that the blogger was sidelined from Lyme research and has become a “Lyme bully” who harasses patient groups and calls workplaces to urge the firing of doctors and scientists who support the idea of chronic Lyme.
It was just one example of how the wider debate over chronic Lyme has turned nasty at times, putting professional reputations at risk on both sides.
After the Infectious Disease Society of America, which sets the standards for diagnosis and treatment of Lyme disease, last updated its standards in 2006, the Connecticut attorney general launched an antitrust investigation of the group. The attorney general, Richard Blumenthal, a Democrat who has since been elected to the U.S. Senate, backed critics’ claims that members of the IDSA’s Lyme panel had professional and in some cases financial conflicts of interest that gave them a vested interest in keeping the current system for treating the disease.
To resolve the case, the IDSA agreed in 2008 to allow a new panel to review the 2006 diagnostic and treatment standards. But the new panel, which included no ILADS doctors, wound up supporting the 2006 standards with only a few minor changes in wording.
Meanwhile some Lyme doctors who have backed broader views of the disease’s definition and treatment have found themselves facing professional scrutiny, even censure, at the hands of their state medical boards, and a few have even had their license to practice medicine revoked.
One outspoken supporter of the IDSA standards, Dr. Michael Wormser, the head of the infectious diseases division at New York Medical College, characterized the disputes in a letter to the editor of The New York Times as a battle “between evidence-based medicine and a counterculture ideology that ascribes pain and fatigue syndromes to ‘chronic Lyme disease.’”
Because the IDSA’s leaders often serve on panels that are the gatekeepers for research at major medical journals, critics contend the organization has stood in the way of studies that threaten its view of the disease.
Ahern noted that insurance companies are another part of the mix and have a vested interest in denying the existence of chronic and progressive Lyme disease. And were the organization to back down now and embrace a more expansive view of Lyme, she said, it could become vulnerable to enormous class-action lawsuits.
Pushing for change
Given all that her daughter has gone through and all that she herself has learned about the disease, Ahern said she has adopted a very specific goal for her lifetime: She aspires to change the official CDC case definition of Lyme disease.
The obstacles to her own daughter being correctly diagnosed with Lyme got her interested in rectifying what she believes is a gross underestimate of the disease.
Changing the definition of Lyme, she said, could attract more attention – and more funding – to this invisible epidemic.
Ahern has already gained the attention of officials at Glens Falls Hospital, and of U.S. Rep. Chris Gibson, R-Kinderhook, thanks to a chance acquaintance made at a Lyme symposium.
Fisk, Ahern’s partner in the Lyme Action Network, met Steve Borgos, a former Queensbury town supervisor who has suffered the effects of Lyme disease for years, and soon were talking about how they could work together on their common interest.
Borgos introduced Fisk to Gary Higley, another Lyme patient, who through his social contacts got the ball rolling for a dialog between the hospital and Ahern and Fisk. This led to a meeting with the hospital president and several physicians and elected officials, including Assemblywoman Teresa Sayward, R-Westport, an aide to state Sen. Betty Little, R-Queensbury, and two aides to Gibson.
The meeting opened the door to other things, Ahern said.
“It started as a conversation and developed into an action,” she said.
At the meeting Ahern pitched her “tale of two Lymes” -- the early-detected, highly treatable Lyme and the chronic Lyme involving multiple organ systems that resists treatment. She said she also gave out her “manifesto,” a collection of scientific papers from 2009 on that raise questions about the medical orthodoxy on Lyme.
Now Ahern is working with Glens Falls Hospital to develop a Continuing Medical Education course on “the other Lyme." As a microbiologist, she has the credentials to offer such a course.
“Unfortunately, the only CME course about Lyme was developed by the Lyme bullies,” she said.
It was also through their acquaintance with Borgos that Ahern and Fisk were included on the planning committee for the Lyme forum held in May at Skidmore. Gibson had started organizing the event in response to constituents asking for help. As an active supporter of the freshman congressman, Borgos had heard that Gibson wanted to put on such an event and suggested that Gibson’s staff involve Ahern and Fisk.
“We tried to come up with something different,” Ahern said. “We wanted to forget infighting and egos.”