Can you have Lyme disease and not know it?

how-long-can-you-have-Lyme-disease-without-knowing-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.

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.”

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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

References:
  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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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13 Replies to "Can you have Lyme disease and not know it?"

  • Cara
    01/17/2021 (5:16 am)
    Reply

    Yes I had tremors and a few people I’ve met with lyme also had. Went away with treatment

  • Rebecca
    01/11/2021 (3:28 pm)
    Reply

    What are your thoughts on band 41 being IND through Igenix for IGA and IGG?

    • Dr. Daniel Cameron
      01/11/2021 (3:49 pm)
      Reply

      There are so many healthy bacteria that cause an indeterminate 41 band. I have to use clinical judgement rather than the test.

  • Jane Seitz
    01/11/2021 (2:29 pm)
    Reply

    Have you seen people afflicted with tremors as a result of tick borne infection?

    • Dr. Daniel Cameron
      01/11/2021 (3:47 pm)
      Reply

      I have seen tremors in some Lyme disease patients. There are so many other causes of tremors.

  • Tracey
    01/11/2021 (1:30 pm)
    Reply

    Bullseye rash in 2006 but didn’t know what it was. Lots of symptoms, fatigue and brain fog being the worst. Multiple surgeries for joint issues.
    2014 antibody test negative.
    2020 Lyme, line blot serum only one IgG p41 Ab present abnormal, Lyme IgG line blot interp. negative.
    IgM p23 Ab present abnormal, but Lyme IgM line blot interp. negative. Lyme total Ab test/reflex IgG/IgM Ab <0.91

    Rheumatoid Dr didn’t even respond. Had to get results direct from lab. No Dr thinks I have Lyme to account for all my symptoms since 2006 and I was healthy prior raising my kids. Drs dismiss Lyme since test results are negative. Say too many patients on long term meds are still sick. Said they can only treat or test for symptoms I have. No help.

    • Dr. Daniel Cameron
      01/11/2021 (3:43 pm)
      Reply

      It is easy to get lost in the system.

  • Mark
    01/11/2021 (11:55 am)
    Reply

    The bottom line is this is a stupid question ,you may not know you have Lyme but you can’t help but understand you are sick.Unlike most people my job regularly had on-call that could result in a week of overtime with 6hrs sleep a night for a week or two weeks at a time which i could do without issue before Lyme . Twenty three years with lyme 11 years before i was diagnosed . At 38 years old in 1998 I was extremely fit working as a power lineman ,with many sports and hobbies . First year arthritis and fatigue ect ect light duty at work trying to hang on, treatment for arthritis was antibiotic protocol from the Road back foundation . The next 9 years i struggled with everything ,i could not do my job like i had before ,i was always carrying some one else even when sick ,my employer treated me like shit even though they knew i was a productive employee .I worked very limited over time the next 10 years after first illness ,i had to pick my times according to how i felt, giving away on-call and $$ due to my condition.. I was sick again 2008 this time the minocycline caused drug induced lupus ,so i lost another full year on light duty still trying to help my colleagues by trying to supply desperately needed mapping a tool we use to work safe . .Then in my 11 year i became both both physically and mentally ill from Lyme and quit work for ever as the stress of abuse over safety left me very distraught . . Since then had many ups and downs including pituitary surgery ,heart investigation ,infection ect ect . .Life has changed since leaving work ,service dog keeps me alive ,and daily outings with my dog are still the hi light of my day . Only a fool would not know something is wrong with your health ,you can go without knowing but you definitely know something is wrong .

    • Dr. Daniel Cameron
      01/11/2021 (3:42 pm)
      Reply

      I have patients who knew they were sick but no one addressed the issues.

  • Kaye Escott
    01/11/2021 (7:42 am)
    Reply

    My husband had a bullseye rash in 2005 and continues to have symptoms. Have seen numerous doctors who say we dont have Lyme disease in oklahoma. Being treated by rheumatologist now which has helped some.

    • Dr. Daniel Cameron
      01/11/2021 (7:50 am)
      Reply

      It is frustrating to have a husband who is ill and not have reliable tests to be sure there is no evidence of Lyme disease. I am glad he has found some relief with the rheumatologist.

  • Ellen Marshall
    01/11/2021 (6:38 am)
    Reply

    Thank you. 20 years I was misdiagnosed. I have Lyme, Babesia, Bartonella, and Morgellons.

    E Migrans rash was a “spider bite.” Test at Lyme clinic in Boston negative.
    Psych symptoms were sudden onset bipolar.
    Arthritis symptoms in wrists, ankles, hips, DX everything from bad shoes to bad posture to the psych meds for bipolar.

    After 14 month taper off psych meds, I got my mind back and found naturopathic care, tested Igenex, but not enough bands for MD to say yes, you have it. Many naturopaths later, I can walk again, was dancing until Covid Pandemic hit. But now my stamina. and strength are terrible,. Then Morgellons appears.

    Treating everything now, as a last ditch effort to survive until I finish my memoir, due out in 2021. Greeting from WORLDS: A Road Trip to Hell and Back.

    • Dr. Daniel Cameron
      01/11/2021 (7:53 am)
      Reply

      I have patients who have benefited after resuming treatment for a tick borne infection.


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