For Julia Wagner, conquering Lyme disease is personal.
Eleven years ago, she came down with the tick-borne illness. Though most people recover quickly after a course of antibiotics, Wagner was among those who wound up with complex infections. Over the course of a year, she suffered dramatic neurological changes, temporarily losing her memory and her ability to express herself. Aggressive treatment eventually reversed her symptoms, she says, and inspired her to help others as president of the PA Lyme Resource Network.
Wagner was lead organizer of a recent two-day conference sponsored by Drexel University's College of Medicine, the International Lyme and Associated Diseases Society, and the PA Lyme Resource Network. Researchers and physicians gathered to hear about a different way of understanding Lyme disease that may lead to new treatment approaches.
"The conference was an outgrowth of parallel paths, that of clinicians driving improvement in practice to address Lyme and related co-infections, and researchers who have been pursuing the trail of persistent complex infections," Wagner said.
A 2015 report published in PLOS ONE from the Johns Hopkins Bloomberg School of Public Health estimates there are 240,000 to 440,000 new cases of the illness diagnosed every year at a yearly cost to the U.S. health system of between $715 million and $1.3 billion. Pennsylvania ranks first or second in the nation for Lyme cases, according to the Centers for Disease Control and Prevention.
About 10 percent to 20 percent of patients treated for Lyme disease with a two- to four-week course of antibiotics will experience "lingering symptoms of fatigue, pain, or joint and muscle aches, sometimes lasting for over six months," the agency says on its website.
The approach to what the CDC calls posttreatment Lyme disease syndrome and what others, including Wagner, call chronic Lyme disease, is controversial. Most experts believe posttreatment symptoms result from residual damage from the initial Lyme infection. Others attribute continuing symptoms to persistent infection with Borrelia burgdorferi (Bb), the pathogen that causes Lyme disease.
This disagreement has spawned two camps: those who believe a short course of antibiotics is sufficient to fight Lyme infection, and those who advocate for a much longer course.
So far, studies have not shown that patients who received prolonged courses of antibiotics did better than those treated with placebos. And long-term antibiotic treatment has been linked to serious complications, including antibiotic resistance.
"The bulk of the evidence shows a lack of convincing evidence that long-term antibiotic treatments make people feel better," says Paul Auwaerter, clinical director of the division of infectious diseases at the Johns Hopkins University School of Medicine. "If there was evidence to the contrary, I would change my practice."
The shift in thinking reported on at the recent conference involves a recognition that ticks can be infected with and transmit other pathogens such as Bartonella and Babesia, and that these other pathogens can also make you sick,, said Garth Ehrlich, executive director of Drexel's Center for Advanced Microbial Processing & the Center for Genomic Sciences.
This means that although Bb spirochetes - corkscrew-shape bacteria - can target the skin, joints, central nervous system, and vascular system, there are many strains, even within the Bb species itself, that may spawn chronic problems.
"We need to understand how we address these pathogens once we know that there are multiple co-infections," said Peter Nara, a veterinarian and cofounder of Biological Mimetics Inc. in Maryland, who spoke about future vaccine development at the conference. "From a clinical standpoint, this finding is going to have significant outcomes for patients. Many now can be treated in the acute phase with antibiotics more targeted to the co-infectious agents."
In addition, Nara said, scientists are starting to recognize the complexity of the humble tick.
"We used to say that we understood it was one tick, one organism, that caused these symptoms. Now, we need to look into all of the ticks that inhabit these temperate humidity zones of vegetation that animals and people explore."
"It's sort of taking the lid off Pandora's box," Nara said.
Co-infections spotlight one of the biggest problems with Lyme disease: detecting it. Without proper diagnostic testing, "it's hard to tell if someone has Lyme disease or some other infection," Ehrlich said.
"If you know where the organism is - such as arthritis in the knee or a rash on the skin - you can do a DNA test, but you can't get a biopsy from the brain, which is where many problems come from," Ehrlich said. "What we need is a type of diagnostic where we do whole-body images so we can detect the organism wherever it is."
Acknowledging that Lyme may be a number of different pathogens is only one roadblock in tackling the disease.
In chronic infections, bacteria adapt into slow-growing biofilms - a complex community of multiple organisms surrounded by an extracellular wall. Bacteria - often several types - live within that matrix, and, according to Ehrlich, can become highly resistant to even high concentrations of antibiotics.
"When you give antibiotic doses for a prolonged period of time, you reduce the size of the biofilm, but you won't get rid of them," Ehrlich said.
European researcher Judith Mikolossy, director of the Alzheimer's Prevention International Foundation and the International Alzheimer Research Center in Switzerland, spoke at the conference about her work on seeking links between Bb and dementia using the model of other spirochetes, including syphilis and a periodontal bacteria, both of which can cause dementia.
"Recent observations revealed the presence of various types of spirochetes, including Bb and several periodontal pathogen spirochetes, in the brains of Alzheimer's patients," Mikolossy said. That presence appears not to be coincidence, she said, explaining that her work suggests the bacteria are causing the brain to change.
What researchers are discovering about the complexity of Lyme may come as a "relief to many clinicians," Nara said.
"Patients have been describing symptoms that they saw and thought they were crazy," he said.
"The disease is evolving right in front of us. There is a tremendous amount of work that needs to be done."