There are several published papers that address the question: Can you have Lyme disease and not know it? Logigian and colleagues described chronic neurologic Lyme disease patients who were ill for up to 14 years prior to being diagnosed. Their symptoms included fatigue, poor memory, a sleep disturbance, headaches, lightheadedness, and joint pain.1
Fallon and colleagues described Lyme disease patients who had been misdiagnosed on average for 2 years with a psychiatric disorder. They were initially presumed to suffer from “paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.”2
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Another study by Fallon found that Lyme disease patients with Lyme encephalopathy were ill an average of 2 years before being diagnosed.3
Cases with persistent Lyme disease symptoms
I described cases of Lyme disease patients who had been sick for 6 to 8 years in a paper in the Journal Evaluation Clinical Practice.4 Four of the individuals were included in a consecutive case series of 100 Lyme disease patients. All patients were positive for Lyme disease by 5 or more bands on a IgG Western blot test.
- Case 1: A 35-year-old man presented with an erythema migrans rash. He was tested one week after the rash but never re-tested. He was ill for 8 years before diagnosed and treated.
- Case 2: A 26-year-old girl initially was diagnosed with Epstein Barr and strep infection. Her tonsils were subsequently removed. She was ill for 8 years before being diagnosed and treated.
- Case 3: A 57-year-old woman had a tick bite followed by a swollen right knee. Her swollen right knee was diagnosed as a meniscus tear. She was ill for 6 years before being diagnosed and treated.
- Case 4: A 16-year-old boy was diagnosed with Bell’s palsy. He did poor in school. He was ill for 6 years before being diagnosed and treated.
How long can you have Lyme disease and know it?
Klempner described individuals who were ill an average of 4.7 years before they enrolled in a Lyme disease clinical trial, sponsored by the National Institutes of Health (NIH).5
Fallon described individuals with Lyme encephalopathy who were ill an average of 9 years before enrollment in a second NIH-sponsored treatment trial.3
Meanwhile, Aucott and Rebman described a group of patients with Lyme disease who failed a three-week course of doxycycline. The patients’ remaining symptoms were attributed to post-treatment Lyme disease syndrome (PTLDS) rather than a persistent infection.6 “PTLDS may persist for >10 years in some patients with culture-confirmed early Lyme disease,” wrote Weitzner and colleagues.7
Related Articles:
6 reasons for delayed treatment of Lyme disease
Study finds: misdiagnosis and delayed diagnosis common for Lyme disease patients
References:
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. Nov 22 1990;323(21):1438-44. doi:10.1056/NEJM199011223232102
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. Nov 1994;151(11):1571-83. doi:10.1176/ajp.151.11.1571
- Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. Mar 25 2008;70(13):992-1003. doi:10.1212/01.WNL.0000284604.61160.2d
- Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract. Jun 2007;13(3):470-2. doi:10.1111/j.1365-2753.2006.00734.x
- Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. Jul 12 2001;345(2):85-92. doi:10.1056/NEJM200107123450202
- 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. doi:10.3389/fmed.2017.00224
- Weitzner E, McKenna D, Nowakowski J, et al. Long-term Assessment of Post-Treatment Symptoms in Patients With Culture-Confirmed Early Lyme Disease. Clin Infect Dis. Dec 15 2015;61(12):1800-6. doi:10.1093/cid/civ735
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