Ask the Lyme Doc: Does Lyme disease stay with you forever?
All too often, physicians assume that Lyme disease is easy to diagnose and treat. But for those clinicians treating tick-borne illnesses on a regular basis, Lyme disease is clearly a complex illness that is frequently misdiagnosed and challenging to treat with some patients experiencing chronic, long-lasting symptoms. Doctors treating Lyme disease are often asked by patients: Does Lyme disease stay with you forever or can it be cured?
Although many patients will improve with appropriate treatment, others will experience ongoing Lyme disease symptoms that may stay with them forever. A growing number of case studies continue to document patients with chronic illnesses associated with Lyme disease.
Following are several examples:
Chronic neurologic Lyme disease
In the New England Journal of Medicine, Logigian and colleagues described patients with chronic neurologic Lyme disease who had been ill for years.  Their symptoms included fatigue, poor sleep, cognitive impairment, irritability, headaches, lightheadedness, and joint pain. Some of the patients improved with antibiotic treatment but symptoms eventually reoccurred. Others failed treatment. The authors expressed concern that treatment may not have eradicated the infection.
Neuropsychiatric Lyme disease
Fallon and colleagues described patients with Lyme disease, who were initially presumed to have a psychiatric illness.  The patients had been diagnosed with “paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”Lyme disease can lead to chronic symptoms including fatigue, pain, cognitive impairment and even psychiatric manifestations. Click To Tweet
In another study, Fallon et al. described individuals with Lyme disease who had been ill an average of 9 years. These patients had failed on average of two previous treatments, with many of them failing retreatment.
Post-Treatment Lyme Disease Syndrome*
Rebman and colleagues found that despite antibiotic treatment, patients with Post-Treatment Lyme Disease Syndrome (PTLDS) remained ill with pain, fatigue, impaired cognitive function, and poor functioning. 
Central Sensitization Syndrome and Pain
Researchers have described central sensitization syndrome in patients with Post-Treatment Lyme Disease Syndrome. “The primary symptoms of central sensitization include pain, fatigue, and sensory hyperarousal.”  Meanwhile, Hanna et al. discussed the case of a woman with PTLDS who experienced chronic, severe pain. 
Postural Orthostatic Tachycardia Syndrome (POTS)
Kanjwal and colleagues described 5 Lyme disease patients who developed a type of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome (POTS). “These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope.” 
Furthermore, they added, “The debilitating nature of these symptoms had resulted in loss of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension.”
Pediatric Acute-onset Neuropsychiatric Syndrome
In some individuals, Lyme disease has been associated with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which is characterized by the onset of several neurologic and/or psychiatric symptoms. Swedo and colleagues have suggested further studies to determine whether Lyme disease could lead to PANS. 
In the CDC’s Morbidity and Mortality Weekly Report, clinicians described 5 deaths due to Lyme carditis,  while Yoon and colleagues described a 17-year-old man who died of Lyme carditis  and another study reported a female patient who died from the tick-borne illness Babesia. 
Editor’s note: I am not in favor of the term Post-Treatment Lyme Disease Syndrome until there is a reliable test to demonstrate the absence of a persistent infection.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Batheja S, Nields JA, Landa A, Fallon BA. Post-treatment lyme syndrome and central sensitization. J Neuropsychiatry Clin Neurosci. 2013;25(3):176-186.
- Hanna AF, Abraham B, Hanna A, Smith AJ. Effects of intravenous ketamine in a patient with post-treatment Lyme disease syndrome. Int Med Case Rep J. 2017;10:305-308.
- Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
- Swedo SE, Leckman JF, Rose NR. From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Pediatrics & Therapeutics.1-8.
- Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016;186(5):1195-1205.
- Yoon EC, Vail E, Kleinman G, et al. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015;24(5):317-321.
- Kwon HY, Im JH, Park YK, Durey A, Lee JS, Baek JH. Two Imported Cases of Babesiosis with Complication or Co-Infection with Lyme Disease in Republic of Korea. Korean J Parasitol. 2018;56(6):609-613.
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