CAN YOU HAVE LYME DISEASE AND NOT KNOW IT?
Ask the Lyme Doc series explores some of the most commonly asked questions about Lyme disease and other tick-borne illnesses. Individuals can have Lyme disease and not know it for years, mistakenly attributing their symptoms to other illnesses or being misdiagnosed. This edition explores the question: How long can you have Lyme disease without knowing it?
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
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 JournalEvaluation 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
- 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
The PTLDS moniker is dooming patients.
By stating that only 10-20% go on to suffer debilitating symptoms, public health ‘authorities’, the media, and researchers ignore a much larger percentage (30-40%) who were diagnosed and treated late. Adding the groups together reveals a whopping 60% or more that suffer long-term symptoms.
PTLDS is also misleading in that it ignores persistent chronic infection.
Personally, I’m eternally grateful to our doctor who continued to treat both my husband and I with extended antimicrobials. I hesitate to think where we would be. I’m also thankful to report this treatment philosophy has restored our health. I consider us in remission.
We are far from alone.
Accepting the PTLDS moniker ignores the Peer-Reviewed Evidence of Persistence of Lyme.
Words and definitions matter. Agreeing and going along with the PTLDS moniker ignores science showing persistent/chronic infection, and that’s a BIG DEAL.