When Lyme causes dysfunction of the autonomic nervous system
By Nancy Dougherty
Infection-associated chronic illnesses such as Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and chronic Lyme disease share similar symptoms and may share important biologic mechanisms, too.
Dysautonomia, or autonomic nervous system dysregulation, is widely accepted as an underlying contributor to long COVID and ME/CFS.
A multidisciplinary team at Johns Hopkins University School of Medicine has published a research review in Frontiers in Neurology that implicates dysregulation of the autonomic nervous system in post-treatment/persistent Lyme disease.
Common symptoms of these infection-associated chronic conditions include severe fatigue, musculoskeletal pain, cognitive and sleep difficulties.
Although not yet well-established in the medical literature, the Johns Hopkins team, by scrutinizing case reports, autopsy and primate studies, found compelling clinical and biologic bases for the association between dysautonomia and Lyme disease.
More research is warranted to better understand disease mechanisms and identify biomarkers to improve diagnostics and treatments.
Postural Orthostatic Tachycardia Syndrome (POTS), the most common manifestation of dysautonomia, is reported to occur after an acute Lyme disease infection. POTS has been recognized by some clinicians as a contributor to post-treatment/persistent Lyme disease but has not been studied in depth.
POTS results from impaired regulation of blood flow, particularly when in an upright position. Symptoms can be debilitating and include brain fog, severe fatigue, profound weakness with standing, racing heart, exertional intolerance, light-headedness, and muscle aches. When properly evaluated with formal testing, POTS can be diagnosed and treated.
More research needed
There are gaps in knowledge that the Johns Hopkins researchers aim to address in prospective studies of Lyme disease-associated dysautonomia in order to:
- Identify underlying abnormal biologic mechanisms causing Lyme disease-associated dysautonomia and to compare those with other infection-associated chronic illnesses
- Investigate small-fiber neuropathy, endothelial dysfunction, mast-cell activation, autoantibodies, vagus nerve damage, gut microbiome disruption, neuroinflammation, neurotoxicity, genetic predeterminants and other factors
- Determine the prevalence of small-fiber neuropathy and autonomic dysfunction in chronic Lyme disease using objective autonomic tests and skin biopsies
- Understand the relationship between acute Borrelia burgdorferi infection and the development of small-fiber neuropathy and autonomic dysfunction
- Understand the contribution of co-infections to chronic symptoms and dysautonomia
- Expand prior autopsy and animal studies to better understand the mechanisms Borrelia burgdorferi utilizes to disrupt the autonomic nervous system
Treatment trials are also important to advancing patient care:
- Randomized studies of IVIG treatments are needed
- Vagus nerve stimulation treatment studies are in progress (at the Columbia University Alexandra and Steven Cohen Foundation Clinical Trial Network site)
Authors of this paper are renowned international authorities in ME/CFS, POTS, and Lyme disease. Research at the Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) Program is ongoing in ME/CFS and Long COVID, and Lyme disease POTS/dysautonomia research is now underway at the POTS Program as well.
To help address some of the gaps in knowledge, new prospective Lyme disease research studies at Johns Hopkins are utilizing transcranial doppler ultrasound, tilt table testing, and other objective tests to help elucidate the abnormalities and mechanisms of Lyme disease-associated dysautonomia. This is the first research program focusing on understanding POTS/dysautonomia in Lyme disease.
Please visit here for more background information on POTS and Lyme disease, including symptoms, diagnostic tests and treatments.
Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.