Post-Treatment Lyme Disease Syndrome (PTLDS) / Chronic Lyme / Persistent Lyme are names of a disease that results from an infection with Borrelia burgdorferi, which are carried by ticks.
A long-lived debilitating illness
Post Treatment Lyme Disease Syndrome
(PTLDS)/Chronic Lyme/Persistent Lyme are all names of a disease that results from an infection with Borrelia burgdorferi, which are carried by ticks. Although most Lyme disease cases can be cured in two to four weeks with antibiotics, for some cases several debilitating symptoms will remain and become PTLDS, Chronic Lyme or Persistent Lyme.
“An estimated 2 million individuals are living with PTLD in 2020, making it a significant public health concern. The cost of care for PTLD is likely to be profound, due to the chronicity of symptoms, their severity, and the large number of affected individuals. Due to the lack of a case definition or objective quantifiable biomarkers, public and private insurance does not recognize PTLD or bear the costs of this treatment, which are paid by patients themselves.
Better diagnostic tests to identify both acute Lyme disease as well as the transition to PTLD are urgently needed. Additionally, we need better definition of biomarkers that could be used as measurable treatment endpoints in clinical trials, which would lead to improved treatment. Since immune dysfunctions accompany long-term symptoms, more understanding of immune responses in both people who have recovered, as well as those who continue to be ill would help clarify the process of disease.
Hopefully, with improved definition of persistent symptoms and more effective treatment, few, if any, will progress to PTLD. “
By Mayla Hsu, Ph.D.
Director of Research and Science
Global Lyme Alliance
To aid in the diagnosis, OMF is developing a patient-driven tool named “Personalized Automated Symptom Summary (PASS)” that is intended to aid a clinician to more efficiently define the character and priorities of symptoms for patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), PTLDS / chronic / persistent Lyme disease, or Fibromyalgia.
The overall strategy is to reduce the time spent by a clinician to evaluate and diagnose a patient with a chronic illness. The intent is to bridge the communication gap between patient and doctor, helping patients to more accurately and efficiently convey their symptoms to their treating physician.
There are also no known treatments of the PTLDS / chronic / persistent Lyme disease, some patients get better over time, but that may take years, if ever at all.
Progress in ME / CFS research will help find answers to PTLDS / chronic / persistent Lyme disease research and vice versa. Many people infected with Borrelia burgdorferi develop ME/CFS-like symptoms. Therefore, understanding ME / CFS and PTLDS / chronic / persistent Lyme disease is crucial to improving the lives of millions.
Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by these devastating diseases!
References: Please visit our Strategic Partners to learn more about Lyme disease:
- Mayla Hsu, PhD, Director of Research and Science, Global Lyme Alliance, January 2021, Excerpts from “Does Chronic Inflammation Cause PTLD?
- Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 22, 341-360, vii-viii, doi:10.1016/j.idc.2007.12.011 (2008).
- DeLong, A., Hsu, M. & Kotsoris, H. Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020. BMC Public Health 19, 352, doi:10.1186/s12889-019-6681-9 (2019).
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