Though the controversy continues about whether or not antibiotics are always a full cure after a recent tick-bite, and whether or not infectious organisms persist, some thoughtful research is showing that as many as 38% of people who received the standard antibiotic treatment may have varying levels of persisting symptoms.
Lyme disease is complex! As a disease, it is caused by not just one but various genospecies of the spirochetal bacteria Borrelia burgdorferi sensu lato, and it poses significant health challenges. If left untreated, it can lead to a range of early and late dermatologic, cardiac, neurologic, and joint manifestations, among others. Despite CDC-endorsed appropriate antibiotic treatment, some patients continue to experience persistent symptoms such as fatigue, musculoskeletal pain, and cognitive difficulties, collectively impacting their quality of life. This phenomenon, though not unique to Lyme disease, raises crucial questions about its long-term effects.
A 2022 study by the Johns Hopkins Lyme Disease Research Center provides valuable insights into the post-treatment outcomes of Lyme disease patients.1 This peer-reviewed prospective cohort study, the largest of its kind in the U.S., focused on the longer-term outcomes of patients who were diagnosed early and treated promptly. And some of the findings will likely surprise you!
Purpose of the Study
The primary aim of the study was to rigorously determine if persistent symptoms reported by patients following early diagnosis and prompt treatment for Borrelia burgdorferi infection are significant and distinguishable from those found in healthy controls.
Methodology
This observational study involved 234 patients who were early diagnosed and treated for Lyme disease using antibiotics, meeting standardized criteria for the diagnosis of acute Lyme disease, such as documented erythema migrans rash and no other specific comorbidities. These patients were evaluated for specific symptoms and the functional impact of these symptoms was again reviewed 6-12 months post-treatment. A control group of 49 healthy individuals, without a history of Lyme disease, was also assessed using the same criteria.
Participants completed a series of comprehensive, standardized symptom-based surveys covering fatigue, pain, sleep, depression, cognitive symptoms, and quality of life. The study uniquely controlled for potential confounders including sex, race, education, heart disease/hypertension, mental health disorders, depression, and prior traumatic life events.
Key Findings
The study revealed that 14% of early treated Lyme disease patients experienced persistent symptoms such as fatigue, pain, and cognitive challenges 6-12 months after initial antibiotic treatment, enough so that they were considered to have 'Post-Treatment Lyme Disease' (PTLD). This term was indicative that they reported higher incidences of joint pain, memory problems, depression, and had 2-3 times the odds of experiencing moderate or severe fatigue and muscle pain. This was significantly higher compared to the 4% of the control group exhibiting similar symptoms. Other noteworthy take-aways included:
Patients with prior Lyme disease were approximately five times more likely to meet symptom and functional impact criteria for post-treatment Lyme disease compared to those without prior Lyme disease.
Females were four times as likely as males to meet the criteria for post-treatment Lyme disease. Additionally, for each increase in potentially traumatic life events, the risk of meeting the criteria increased by 30%. These findings suggest that female sex and increased exposure to traumatic life events might impact the initial biological response to Borrelia burgdorferi infection and elevate the risk for persistent symptoms.
Though 14% of patients experienced subsequent symptoms to meet the classification for PTLD, another 24% of patients reportedly had "persistent symptoms with normal functioning". This was, in my mind, a very intimidating statistic. Roughly a quarter of the participants were NOT returning to "Pre-Lyme Health Status".
Implications
The significant persistence of symptoms in 14% of patients likely underestimates the true rate of persistent symptoms, as the study focused only on early diagnosed and treated patients. In real-world settings with misdiagnosed or delayed cases, the risk of prolonged illness could be as high as 20-30%!
And that other 24%, what about them? They were well enough to fall off the radar. However, this clinician is concerned that those people are a 'diagnosis-waiting-to-happen'! Maybe their immune systems are strong enough and stress levels low enough that the causes for lingering symptoms are kept in check, but one day when these fortifications are weakened from life on planet Earth, their symptoms may worsen and treatment delayed while they chase down possible etiologies of the health concerns.
With approximately 476,000 new Lyme disease cases annually in the U.S., the "long haul" impact of the disease is a significant public health concern.2 The main symptoms of post-treatment Lyme disease—fatigue, generalized pain, and cognitive dysfunction—mirror those seen in other infection-associated chronic illnesses such as long COVID or even in Chronic Fatigue Syndrome (CFS), also known as 'Myalgic encephalomyelitis'(ME). Further research is necessary to understand common mechanisms like inflammation, immune response dysregulation, autonomic nervous system dysfunction, or pathogen persistence that might underlie these chronic conditions.
This study underscores the need for heightened awareness, early diagnosis, and prompt and thorough treatment of Lyme disease to mitigate long-term health impacts and improve patient outcomes. It also substantiates that many people may have long term effects, despite conventional care.
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References
1. Aucott, John N et al. “Risk of post-treatment Lyme disease in patients with ideally-treated early Lyme disease: A prospective cohort study.” International journal of infectious diseases : IJID : official publication of the International Society for Infectious Diseases vol. 116 (2022): 230-237. doi:10.1016/j.ijid.2022.01.033.
2. Kugeler, Kiersten J et al. “Estimating the Frequency of Lyme Disease Diagnoses, United States, 2010-2018.” Emerging infectious diseases vol. 27,2 (2021): 616-619. doi:10.3201/eid2702.202731.
The content and any recommendations in this article are for informational purposes only. They are not intended to replace the advice of the reader's own licensed healthcare professional or physician and are not intended to be taken as direct diagnostic or treatment directives. Any treatments described in this article may have known and unknown side effects and/or health hazards. Each reader is solely responsible for his or her own healthcare choices and decisions. The author advises the reader to discuss these ideas with a licensed naturopathic physician.
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