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Treatment options limited for chronic Lyme patients
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Over the years, many patients with unexplained medical symptoms — including chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia, among a litany of others — have been diagnosed with chronic Lyme disease and treated with long-term antibiotics. This treatment, however, may not provide any clinical improvements for these patients and could lead to adverse effects, according to infectious disease specialists.
“There is no evidence of meaningful benefit, and there is substantial evidence that such treatment is associated with frequent and significant adverse side effects,” Eugene D. Shapiro, MD, professor of pediatrics and epidemiology at Yale School of Medicine and Infectious Disease News Editorial Board member, said during an interview.
In fact, findings from a randomized clinical trial recently published in the New England Journal of Medicine suggest that in patients with persistent symptoms related to Lyme-disease, longer-term antibiotic treatment offered no additional beneficial effects on health-related quality of life compared with shorter-term therapy.
Despite these findings, many patients with persistent symptoms report improvements after antibiotic therapy. These self-reported improvements seem to open the door to other medications safer than long-term antibiotics or even a placebo, according to Gary P. Wormser, MD, professor of medicine and chief of the division of infectious diseases at New York Medical College.
“Prior blinded studies on the use of antibiotics versus placebo in chronic Lyme have shown improvement in about 35% of those receiving placebo. If one-third of our patients could be improved by giving them placebo, is that not good?” Wormser told Infectious Disease News. “If they feel better, and we can do it one-third of the time, that is a pretty powerful medication for a constellation of symptoms that is so difficult for mainstream medicine to manage. The problem is, ethically, we cannot give placebos. Antibiotics are not superior to placebo and have many more potential adverse effects. Other approaches are needed.”
Paradox of chronic Lyme disease
Patients who present with medically unexplained symptoms and inconsistent clinical presentations create challenging treatment decisions for ID physicians.
“ID doctors are very focused on a specific diagnosis,” Wormser said. “They are not the best doctors to take care of nonspecific symptoms.”
In addition, physicians sometimes unintentionally convey the idea that the unexplained symptoms may be the patient’s fault, rather than the patient being a victim of a disease.
“A lot of patients, when they go to a subspecialist and are told it is not Lyme disease, what they hear is: ‘You are crazy, you are making it up, it is all in your head,’ ” Shapiro said. “They hear that even when the [physician] does not say that.”
The CDC and the Infectious Diseases Society of America do not recognize the disease as “chronic Lyme,” but as “post-treatment Lyme disease syndrome,” or PTLDS.
Researchers from Johns Hopkins University reported that the long-term consequences of Lyme disease infection cost upwards of $1.3 billion annually in the United States, or almost $3,000 per patient on average.
Focusing on the symptoms
Despite the unclear epidemiology, ID physicians can help these patients, according to Shapiro, who said the best approach is to target the symptoms.
“An important thing is to focus on the symptoms, not the diagnosis,” Shapiro said.
Shapiro said he regularly consults with a naturopathic physician who offers mindfulness and other stress-reducing therapies for patients with unexplained symptoms.
“These patients need to have a place to go — where they can feel that somebody understands them, affirms that they are suffering, but also has a strategy to help them get out of that,” Shapiro said. “ID physicians should have available somebody at their institution or in their community who is well-trained and to whom they can refer the patient.”
Shapiro said he regularly consults with Ather Ali, ND, MPH, MHS, director of integrative medicine at Yale School of Medicine, who helps these patients with a technique called mindfulness-based stress reduction, as well as other therapies that focus on symptom relief.
“Whether or not stress has caused their pain, the stress certainly makes it worse,” Ali told Infectious Disease News. “And for most folks, a stress reduction program will help them cope with it.” – by Will Offit
- References:
- Adrion ER, et al. PLoS One. 2015;doi:10.1371/journal.pone.0116767.
- Ali A, et al. Am J Prev Med. 2015;doi:10.1016/j.amepre.2015.07.019.
- Berende A, et al. N Engl J Med. 2016;doi:10.1056/NEJMoa1505425.
- Wormser GP, et al. Clin Infect Dis. 2006;doi:10.1086/508667.
Disclosures: Ali reports no relevant financial disclosures. Shapiro reports being an expert witness in malpractice cases involving Lyme disease, and being an unpaid board member of the American Lyme Disease Foundation. Wormser reports receiving research grants from bioMérieux South Africa, Immunetics, Institute for Systems Biology and RareCyte. He also reports owning equity in Abbott, being an expert witness in malpractice cases involving Lyme disease, and being an unpaid board member of the American Lyme Disease Foundation.