2012 LDA Conference Summary

Conference Reveals Lyme Can Persist After Short-Term Therapy

Animal models confirm survival of Lyme spirochete in spite of treatment

By Jessica Thomson *

An eclectic group of scientists, researchers, physicians, veterinarians and molecular biologists assembled in Philadelphia to present scientific research and clinical papers for Lyme and other tick-borne diseases last September.

The purpose of the continuing medical education (CME) scientific conference is to educate the physicians and researcher attendees about Lyme and other tick-borne diseases. The knowledge gleaned is used to improve their medical practices if they are clinicians and is used to foster collaborations with others if they are researchers The public and advocate attendees are able to disseminate scientifically and clinically established information to patients and may select new research projects to fund based on what the conference faculty has presented.

Brian Fallon, MD, MPH
Dr. Fallon, conference director and co-chair, said that the conference unites ivory tower researchers “with the people.” Dr Fallon serves as Director of Columbia University Lyme & Tick-Borne Diseases Research Center. “The conference also brings together the researchers with the clinicians, so the researchers can hear first-hand what the clinicians are struggling with. And, it fosters collaboration among researchers,” Fallon added.

“If I were a patient, I’d be most excited about knowing that researchers are taking this disease seriously and coming together to prove Borrelia’s persistence despite antibiotics. Until recently, that was considered to be an impossibility.”

The publication of research helps the Lyme community contest the theory that it was extraordinarily unlikely for persistent Lyme to occur post treatment. “Now we have these major studies published where nobody can dispute the persistence of the organism,” Fallon said.

Stephen W. Barthold, DVM, PhD
Dr. Barthold, Director, Center for Comparative Medicine at UC Davis, has been involved in Lyme disease research since its discovery in Connecticut over 35 years ago. His training as a pathologist and his lengthy career as a veterinarian are an important foundation for examining Lyme disease. He explained that being a veterinarian allows him to examine the life stages and variation of host responses of Borrelia in animals, then interpret and apply the results to humans. “Animal model studies are critical to get a handle on what’s going on with Lyme disease. Unless you understand the life stages of Borrelia and the variation of host response, you’ll never get a true understanding,” he said.

Dr. Barthold, keynote speaker and conference co-chair, said he helped choose presenters for the conference from the Lyme scientific community he has worked with over the years, calling them “a wonderful group with wonderful diversity.” Speaking of his fascination with the complexity of the Lyme disease organism, he said, “It truly needs multiple disciplines looking at it from multiple perspectives.”

Lyme disease draws a wide range of medical and research specialists, because it is as much an ecological disease as an individual disease, he explained. He spoke about the global migration of other diseases spreading to different climatic territories due to global warming. For example, a cow and sheep disease called Blue Tongue is also affected by environmental changes.

Dr. Barthold called Lyme disease “tough to crack.” With multiple studies conducted among multiple labs with multiple antibiotic treatments, all evidence points to the Lyme bacteria as very persistent, he said.  Dr. Bathold explained that most diseases take a long time to gain momentum for positive change, and he understood the sense of frustration among members of the Lyme community who have been asking for amended diagnostic and treatment protocols for years. “Medical science is like a fault zone, and it sticks (in one place) for awhile,” he said.

Drawing on AIDS as an example of another disease that took time to be properly recognized, Dr. Barthold spoke about the disconnect between the patient experience and science generalizing without enough evidence. He believes that the restrictive IDSA Lyme guidelines can change when everyone learns to keep an “open mind” when approaching the disease.

He said that the division of the medical community is nothing new. Medical history is full of stories where the medical community becomes dogmatic and refuses to change its opinion even when evidence is showing the truth. “It’s only when there’s enough collective evidence and people behind it that the disease can move forward,” he said. “Lyme disease is at a crucial point where it’s starting to move forward,” he added.

According to Dr. Barthold, progress in Lyme disease is also slow due to the multiple verifications and repetitions required in scientific research. He feels that the current political environment is killing the advancement of science. Today’s science graduates are not interested in launching a career in Lyme research because there is an uphill battle getting grants, he said. Of the half dozen Lyme disease grants that are proposed each year, the chances of even one of them getting funded is very slim “because if a grant is in any way controversial, that’s enough to stop funding,” said Dr. Barthold. He thinks the only way to change matters is to pressure Congress to give some attention to the way the government is awarding grants.

Dr. Barthold urged the medical community to get out of the dark ages in their thinking about antibiotics. He explained that while antibiotics can cure infection for streptococcus, it is different for Lyme disease because Borrelia is an infection that can evade a perfectly good host immune response as part of its normal biology. That is the problem. The surviving forms of Borrelia are not able to be cultivated, however, so they are different in some way, he said.

Janis Weis, PhD
Janis Weis, who has been researching genetics in mice, sometimes feels distant from patients, but “being around patients and advocates at the conference was invigorating. It’s a reminder of why we’re doing all the work we do and makes me feel like I’m on the right track.” Weis spoke of the years of work behind each of the presentations at the conference. She was happy that finally there seems to be progress in understanding why symptoms are persistent, a concept finally being taken seriously because of the studies using animal models.

Weis’ mouse studies hold significance for patients because they serve as a model for chronic patients who have been treated with antibiotics but whose inflammation persists. Like humans, mice that get swollen joints and have similar pathology serve as a guide to human studies. Her studies have identified that mice once infected with Lyme disease lack an anti-inflammatory protein so they have an over-active immune response. While this over-active immune response clears the bacteria better from tissues, it also results in severe arthritis that persists even after the bacteria can no longer be detected.

Weis is most excited about the Transpogenesis work being done by Steven J. Norris, PhD, another conference speaker. She stated that it “could lead to new discoveries of bacterial genes that could be important for persistence. He’s looking at antigenic variation and how the bacteria evade the immune response.” Weis also learned from the work of LDA conference speaker Nicole Baumgarth, DVM, PhD, with B-cell subversion during Borrelia infection. Weis added that it is a novel concept to find that the IgG becomes more effective if you don’t have

C. Ben Beard, PhD
C. Ben Beard, PhD, Chief, Bacterial Diseases Branch of the Vector-Borne Diseases, Centers for Disease Control and Prevention (CDC), believes the conference is “a great place for scientific minds to come together for honest conversations that can lead to increased trust”

Dr. Beard said he disagreed that Lyme disease is hard to catch and easy to cure. The CDC numbers in his presentation revealed that it’s the most common vector-borne disease in the country, the second most common reportable disease in the Northeast, the third most common in the entire East Coast and the sixth most common in the whole country, “which all prove that Lyme disease is easy to get,” he said.

Dr. Beard admits that even those figures are not accurate because a large number of patients are not being counted properly. He says that he wants the CDC to wake up and acknowledge that Lyme is an important disease. “Our view is there’s lots of tick-borne disease, but we’re not sure it’s [all] Lyme disease,” Dr. Beard said.

Dr. Beard spoke about the double-edged sword that accompanies accurate reporting. “When numbers go up we’re thinking we’ll get more money (for surveillance) but we’re also thinking it’s bad because we’re losing the battle (more people are becoming infected),” he said.

People complain about low surveillance numbers, but dr. Beard’s explanation is that their entire budget could be spent just on surveillance and it still might not be accurate or give them the information they need about how the disease is spreading. The CDC is focusing on 16 states where 97% of all Lyme cases are reported, so they can do a better job of counting, he said. The CDC cannot go into everyone’s backyard to count ticks, Dr. Beard explained. “We just do not have the resources,” he added.

As far as the CDC’s stance on the current number of Lyme cases in the US, he explained, underreporting ranges from three to 12 fold but in reality, the CDC has no idea of how much Lyme disease there is on a national level, which is an astonishing admission.

“[The CDC] is a pro-patient organization – what’s good for public health is good for the patient,” Dr. Beard said. He even calls himself a “Lyme activist.”

Monica Embers, PhD
Dr. Monica Embers presented her findings of post-treatment persistence and sero-diagnosis of Lyme disease in monkeys. Her team has been investigating antibiotic efficacy in controlled animal studies because humans come with varied duration before diagnosis.

“There are lots of different genospecies in nature,” Dr Embers explained, “so we’re doing what we can to try to understand, using the right kind of model systems where infection is controlled, treatment is controlled, and we can really look inside.” Dr. Embers said she was pleased to see that “there’s real momentum, things are really moving along” in research studies for Lyme disease.

NOTE: Ms.Thomson wrote the article for the Lyme Disease Association based on presentations from Faculty at the 2012 conference where she was in attendance and also on post presentation interviews with speakers she taped for the LDA.