Lyme disease symptoms can persist after cure. But how can you separate fact from fiction in treatment?
A mild winter across much of the United States will make Lyme disease more prevalent as springtime spreads across the country. Lyme disease, a bacterial tickborne disease, is near universal throughout the Northeast and is increasingly common in the Great Lakes region. Early Lyme disease is curable with doxycycline 100 mg twice per day, amoxicillin 500 mg 3 times per day, or cefuroxime axetil 500 mg twice per day for 14 days.1 Providers should use doxycycline for patients with penicillin allergy and prefer the latter 2 drugs for pregnant women and children.
A small subset of patients has prolonged symptoms after treatment. The widely accepted term for these continued symptoms is “Post-treatment Lyme Disease Syndrome” (PTLDS). Patients and providers may unknowingly describe this phenomenon with the pseudomedical term “Chronic Lyme Disease.”
PTLDS may have a combination of diverse causes. Uncured patients may have received an inadequate treatment either in length or antibiotic choice. Blood tests may mislead patients because the tests will remain positive long after the infection cure (antibodies show a history of infection). Consider other tickborne infections (eg ehrlichiosis anaplasmosis, Rocky Mountain Spotted Fever, and babesiosis) if the blood tests are negative. Others may have developed an autoimmune arthritis with symptoms similar to a Lyme disease infection.
The relationship between Streptococcus pyogenes and rheumatic fever is a model for possible post-infection autoimmune complications. Whether Borrelia burgdorferi (Lyme disease’s cause) directly triggers autoimmune disease, worsens existing subclinical disease, or has no medical effect at all is unclear. Some patients may be unresponsive to antibiotics due to non-infectious psychiatric and/or neurologic causes (eg fibromyalgia). These causes are more likely if patients complain of symptoms inconsistent with typical Lyme disease.
The International Lyme and Associated Diseases Society advocates for “Chronic Lyme Disease” patients and “Lyme-literate” providers.2 Their guideline is controversial because of poorly supported recommendations. In fact, every recommendation is labeled as supported by “very low-quality evidence” on the National Guidelines Clearinghouse. The most dangerous recommendation is for prolonged (months-long) antibiotic regimens because patients may develop Clostridium difficile-associated diarrhea. An example of a poorly supported idea includes treatment of clinically unseen intracellular B burgdorferi. Further independent government-run laboratories fail to find fundamental aspects of “Chronic Lyme Disease” such as suppressed natural killer cells.3
The American Lyme Disease Foundation is more evidence-based and is appropriately located in Lyme, CT where “juvenile rheumatoid arthritis” was first identified. This organization has helped dispel myths surrounding Lyme disease. Patient advocates, “Lyme-literate” providers, and others have put forward inaccurate information related to Lyme disease. Lyme disease does not cause autism or common neurodegenerative diseases and is not sexually transmitted either.4 IgM and IgG immunoblot testing of synovial fluid produces false positives if wrongly interpreted to mean current bacterial infection.5 Blood testing is a less invasive test for determining a history of Lyme disease infection. Two-tiered testing is unreliable because it produces false-positive IgM results an unacceptable 27.5% of the time.6 Non-reference Lyme specialty laboratories often report false positives due to idiosyncratic diagnostic criteria for patients otherwise diagnosed with chronic fatigue syndrome.7
The National Institute of Allergy and Infectious Diseases has repeatedly, systematically, and comprehensively proven the non-existence of “Chronic Lyme Disease.” They tested the 1) patient-strain B burgdorferi antibiotic susceptibility, 2) antibiotic ability to cross the blood-brain barrier system and persist at effective levels, 3) efficacy against intra- and extracellular pathogens, and 4) maintained the safety and welfare of study patients. PTLDS impairs quality of life but long-term intravenous and oral antibiotic therapy is ineffective beyond a placebo effect (40% success rate). Non-cultivable evidence of B burgdorferi may be free-floating DNA remaining after immune system destruction.
Post-treatment Lyme Disease Syndrome patients should look for symptom relief apart from antibiotics. Mainstream providers should avoid stigmatizing patients expressing continued symptoms after Lyme disease cure. Effective, patient-tailored, evidence-based treatments are available for these patients that ensure their safety from C difficile and other opportunistic infections.