Diagnosis and Treatment of Chronic Lyme Disease: A Complex Issue
Recognition of chronic Lyme disease and the role of long-term antibiotic treatment for persistent symptoms continue to be controversial among researchers, providers, patients, and advocates.
Recognition of chronic Lyme disease and the role of long-term antibiotic treatment for persistent symptoms continue to be controversial among researchers, providers, patients, and advocates. Improvements in the management of patients with Lyme disease will require an open-minded approach that includes multiple fields of medicine, according to experts who participated in a Peer Exchange® panel.
Although the panelists agreed that awareness of Lyme disease has improved somewhat, they stated that the politicalization of the condition has prevented the development of well-funded clinical trials that are unbiased and clinically relevant and created an environment of fear among patients that their symptoms—often severe in nature—will be ignored by providers.
“Their greatest fear is not of having a diagnosis of chronic Lyme disease, but of not being able to have chronic Lyme as a diagnosis, because that prevents the physicians from treating them for the disease they really have,” said Patricia V. Smith.
Trials and Tribulations of a Diagnosis for Lyme Disease
A diagnosis of Lyme disease is notoriously challenging and often involves visits to multiple providers, according to the panelists. “We don’t have a test, for whatever reason, and we don’t have this wonderful magical machine where we can put the blood in and determine, bing, Lyme disease! Boom, not Lyme disease,” said Peter L. Salgo, MD. “And so, we wind up with people with all sorts of multisystem issues. They must go through provider, provider, and provider. This pathway has got to be crazy.”
Robert C. Bransfield, MD, stated that the awareness has improved in recent years and patients may see an average of 5 doctors—whereas he had a case 20 years ago in which he was the 58th doctor to treat the patient. However, Smith pointed out that the awareness among providers depends largely on the region. “If you’re located in a state that’s now considered low incidence, the problem patients have is that they go to a physician, they may have all the symptoms—sometimes they even have an [erythema migrans] rash—and yet that doctor will not consider Lyme disease, even as a part of the differential diagnosis.”
Leonard Sigal, MD, agreed that some physicians refuse to consider Lyme disease even when patients have researched and self-identified their symptoms. “They’ll say, ‘I’ve looked at the internet, and this rash that I have looks very much like this. I think I have Lyme disease.’ And…there are lots of clinicians who won’t listen. It’s very frustrating.”
Smith added that the contentious history of Lyme disease in the medical community and the large number of Lyme disease cases led to an ongoing battle between patients and providers. “Our patients have to fight every minute of every day of their lives while they’re in tremendous pain,” she said.
She also mentioned that the neurologic, musculoskeletal, and arthritic pain—often severe in nature—is typically missing from symptom lists. “It’s one of the things patients say to me most often: ‘Why don’t they have the massive pain that we are in on the symptom list?’”
Lyme Disease and Long-Term Antibiotics: Help or Harm?
Although a standard course of antibiotics is effective for treating most patients with Lyme disease, a small proportion of patients experience lingering symptoms. Some clinicians have prescribed long courses of antibiotics for patients with persistent symptoms, but the efficacy in reducing clinically significant symptoms and associated risks for adverse effects have been hotly debated among experts.
A study summarized in a 2017 issue1 of Morbidity Mortality Weekly Review described 5 individuals with severe complications, including septic shock, bone and joint infections, and intractable Clostridium difficile infections, from long-term intravenous antibiotics for Lyme disease. These results led the authors to conclude that long-term intravenous antibiotics were dangerous and should not be administered to patients with Lyme disease that is refractory to the standard antibiotic course. However, Samuel Shor, MD, noted major limitations of the study and its conclusions.
“They cherry-picked people who were clearly adversely impacted…but how about the thousands of people who have benefitted from the treatments?” he said.
Dr. Shor also disagreed with the author’s claims that chronic Lyme disease does not exist, that the 2-tiered testing system is sensitive, and that long-term antibiotics were ineffective in NIH trials, despite study results showing significant improvement in pain and functionality2 and persistent improvement in fatigue.3 However, he and Sigal acknowledged that long-term antibiotic use can lead to complications and providers should perform a careful differential diagnosis, be proactive with probiotics, and only use antibiotics when absolutely necessary.
The panelists also acknowledged the psychological burden among patients of chronic Lyme disease that is refractory to antibiotics. “You’re instilling a fear factor that is not really often discussed,” said Sigal. “If I have a disease that has not responded to anything that my doctors have given me, what is the future for me?”
The panelists also argued about the validity of conspiracy theories that the research and validity of chronic Lyme disease is controlled by financial conflicts of interest. Smith described the 2008 investigation by Richard Blumenthal, U.S. Attorney General at the time, showing that the creators of the Infectious Diseases Society of America guidelines on chronic Lyme disease had an “undisclosed, vested interest” because they created the definition of the disease, were involved with development of tests and vaccines, and were paid consultants for insurance companies who challenged other physicians who treated patients for chronic Lyme disease. However, Drs. Sigal and Shor countered that they have been on the receiving end of allegations that the research performed at academic centers is controlled by financial incentives and thus tainted.
“I’ve had at least 2 papers rejected by the reviewers who have said that, ‘Well, you earn more than $10,000 [per] year in treating these people; therefore, you’ve got a vested interest in it,” said Dr. Shor.
Improving Care in Lyme Disease
At the conclusion of the Peer Exchange® discussion, the panelists agreed that treatment of Lyme disease requires humility and an understanding of multiple fields of medicine, including psychiatry, entomology, epidemiology, immunology, psychoimmunology, rheumatology, and cardiology, as well as politics.
“You need a broad capability that’s beyond the training of most people,” said Dr. Bransfield. “We can’t have arrogance. We have to know that a lot of the answers to this are outside our field of specialty, so we have to have open dialogue, open communication like we’re having here. That’s what will help resolve this.”
Dr. Sigal agreed that clinicians need to be open-minded to the possibilities of Lyme disease or another condition and recognize that patients are suffering regardless of whether they have Lyme disease.
“You have to be aware of all of the potential mechanisms, and you have to be humble in the sight of all of these competing potentials,” he said. “You have to have an open mind, and ultimately, even if I can’t make a diagnosis, the person who’s sitting in front of me is suffering. We need to stop arguing with each other…and say, ultimately, that the only important thing is the patients are suffering. We have to…sit down and come up with studies, mutually agreeable studies, that will allow us to come up with biomarkers, better seroconfirmatory tests, and better approaches to therapy.”
Smith added that the recent approval of legislation allowing inclusion of patients and advocates in working groups will provide instrumental input on the types of studies needed to improve management of Lyme disease.
“No one knows what research is selected until after it’s done, and then you have no say in the matter,” said Smith. “For Lyme patients, the time has come when they will get a seat at the table, to be able to have input about their disease.”
1. Marzec NS, Nelson C, Waldron PR, et al. Serious bacterial infections acquired during treatment of patients given a diagnosis of chronic Lyme disease — United States. MMWR Morb Mortal Wkly Rep 2017;66(23):607-609. doi: 10.15585/mmwr.mm6623a3.
2. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
3. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 200324;60(12):1923-1930.