Systematic comparisons between Lyme disease and post-treatment Lyme disease syndrome in the U.S. with administrative claims data

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Open Access
Published: March 21, 2023


Post-treatment Lyme disease syndrome (PTLDS) is used to describe Lyme disease patients who have the infection cleared by antibiotic but then experienced persisting symptoms of pain, fatigue, or cognitive impairment. Currently, little is known about the cause or epidemiology of PTLDS.
We conducted a data-driven study with a large nationwide administrative dataset, which consists of more than 98 billion billing and 1.4 billion prescription records between 2008 and 2016, to identify unique aspects of PTLDS that could have diagnostic and etiologic values. We defined PTLDS based on its symptomatology and compared the demographic, longitudinal changes of comorbidity, and antibiotic prescriptions between patients who have Lyme with absence of prolonged symptoms (APS) and PTLDS.
The age and temporal distributions were similar between Lyme APS and PTLDS. The PTLDS-to-Lyme APS case ratio was 3.42%. The co-occurrence of 3 out of 19 chronic conditions were significantly higher in PTLDS versus Lyme APS—odds ratio and 95% CI for anemia, hyperlipidemia, and osteoarthrosis were 1.46 (1.11–1.92), 1.39 (1.15–1.68), and 1.62 (1.23–2.12) respectively. We did not find significant differences between PTLDS and Lyme APS for the number of types of antibiotics prescribed (incidence rate ratio = 1.009, p = 0.90) and for the prescription of each of the five antibiotics (FDR adjusted p values 0.72–0.95).
PTLDS cases have more codes corresponding to anemia, hyperlipidemia, and osteoarthrosis compared to Lyme APS. Our finding of hyperlipidemia is consistent with a dysregulation of fat metabolism reported by other researchers, and further investigation should be conducted to understand the potential biological relationship between the two.
Steven & Alexandra Cohen Foundation, Global Lyme Alliance, and the Pazala Foundation; National Institutes of Health R01ES032470.
The first noticeable issue here is it is nearly impossible to determine if the infection is completely cleared by medications.  This is an ongoing problem.  There is no way to test to determine if the organism(s) are completely cleared, because they are typically not found in the blood – and worthless blood testing is what is used for Lyme/MSIDS.  So, this is a major flaw with the study.
And while numerous things can cause pain, fatigue, and cognitive issues – including treatment itself, it is the experience of this patient and many that I work with that retreatment will often either clear or improve all of these symptoms.  Sometimes it depends upon finding the right drug.  Sometimes it depends upon the right dosage.  And, sometimes it depends upon the length of treatment or all three or anything in between.  Nobody’s the same and everyone seems to respond differently.  This is another ongoing problem.  MSM wants to stuff everyone into a “one size fits all” box, but this is Pandora’s Box.
And while dysregulation of fat metabolism can be improved through diet and other treatments, anemia screams Babesia and osteoarthritis screams Lyme – both of which are typically not going to improve on their own without specific pathogen consideration and subsequent antimicrobial treatment.  Nuance in treating this is what is missing in MSM – which hasn’t changed in 40 years , which is why getting to a Lyme literate doctor is your best recourse.
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