Can You Have Lyme Disease and Not Know It?
Undiagnosed Lyme disease is more common than many realize. Some patients remain ill for years before receiving the correct diagnosis—often after being treated for other conditions.
Lyme disease can go unrecognized for years when symptoms are subtle, fluctuate, or are mistaken for other conditions.
In many cases, patients do not recall a tick bite or develop a classic rash, making early recognition more difficult.
Because symptoms may come and go, some individuals wonder whether they could have Lyme disease for years and not know it. Published studies and case reports suggest that delayed diagnosis can occur.
Logigian and colleagues described patients with chronic neurologic Lyme disease who were ill for up to 14 years before being diagnosed. Symptoms included fatigue, poor memory, sleep disturbance, headaches, lightheadedness, and joint pain.1
Fallon and colleagues described Lyme disease patients who had been misdiagnosed for an average of two years with psychiatric disorders. These included paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.2
Another study by Fallon found that patients with Lyme encephalopathy were ill for an average of two years before receiving a diagnosis.3
Why Lyme Disease Can Go Undiagnosed for Years
Lyme disease may go unrecognized when early symptoms are mild, when a tick bite is not noticed, or when testing is performed too early. Symptoms may also overlap with other conditions, leading to misdiagnosis.
- No recalled tick bite
- Absence of a classic rash
- Symptoms that come and go
- Overlap with conditions such as chronic fatigue syndrome, fibromyalgia, or psychiatric disorders
- Limitations of early diagnostic testing
Cases With Persistent Lyme Disease Symptoms
I described cases of Lyme disease patients who had been ill for six to eight years before diagnosis in a paper published in the Journal of Evaluation in Clinical Practice.4
Four individuals were included in a consecutive case series of 100 Lyme disease patients. All were positive for Lyme disease with five or more bands on an IgG Western blot test.
- Case 1: A 35-year-old man developed an erythema migrans rash. He was tested one week later but never retested. He remained ill for eight years before diagnosis and treatment.
- Case 2: A 26-year-old woman was initially diagnosed with Epstein-Barr virus and a strep infection. Her tonsils were removed. She remained ill for eight years before being diagnosed and treated for Lyme disease.
- Case 3: A 57-year-old woman had a tick bite followed by a swollen knee. It was diagnosed as a meniscus tear. She remained ill for six years before diagnosis.
- Case 4: A 16-year-old boy was diagnosed with Bell’s palsy and struggled in school. He remained ill for six years before receiving a Lyme diagnosis.
How Long Can You Have Lyme Disease and Not Know It?
Klempner described patients who had been ill for an average of 4.7 years before enrolling in a Lyme disease clinical trial sponsored by the National Institutes of Health (NIH).5
Fallon described individuals with Lyme encephalopathy who were ill for an average of nine years before enrollment in a second NIH-sponsored treatment trial.3
Aucott and Rebman described patients whose symptoms persisted after a three-week course of doxycycline. Their remaining symptoms were attributed to post-treatment Lyme disease syndrome (PTLDS).6
“PTLDS may persist for more than 10 years in some patients with culture-confirmed early Lyme disease,” wrote Weitzner and colleagues.7
To learn how early recognition and treatment may prevent long-term complications, see Preventing Chronic Lyme Disease: Why Early Care Matters.
Can You Have Lyme Disease for 30 Years and Not Know It?
It is possible for Lyme disease to go unrecognized for many years, particularly when the original tick bite was unnoticed, no characteristic rash was identified, or symptoms were attributed to another condition.
However, symptoms appearing decades later should not automatically be assumed to result from Lyme disease. A careful evaluation should consider previous exposure, the pattern and timing of symptoms, testing limitations, prior treatment, and other possible medical explanations.
A patient’s exposure history should include more than where that person currently lives. Previous residences, vacations, outdoor activities, summer camps, hiking trips, weddings, and other travel may reveal earlier exposure in a Lyme-endemic area.
Because Lyme disease symptoms overlap with many other medical conditions, a diagnosis decades later requires careful clinical judgment rather than relying on one symptom or laboratory result alone.
Frequently Asked Questions
Can you have Lyme disease for 30 years and not know it?
It is possible for Lyme disease to go unrecognized for many years, particularly when the original tick bite was unnoticed, no characteristic rash was identified, or symptoms were attributed to another condition. However, symptoms appearing decades later should not automatically be assumed to result from Lyme disease. A careful evaluation should consider previous exposure, the pattern and timing of symptoms, testing limitations, prior treatment, and other possible medical explanations.
Can Lyme disease go unnoticed for years?
Yes. Some patients do not recall a tick bite or rash, and symptoms may fluctuate or resemble other illnesses.
What conditions can Lyme disease be mistaken for?
Lyme disease symptoms may overlap with chronic fatigue syndrome, fibromyalgia, psychiatric disorders, viral illnesses, and neurologic conditions.
Can Lyme disease symptoms come and go?
Yes. Some patients experience intermittent symptoms that fluctuate over time, which can delay recognition.
Why is Lyme disease sometimes diagnosed late?
Delayed diagnosis may occur because of subtle early symptoms, lack of rash, missed tick bites, or limitations of early testing.
Can Lyme disease be detected years later?
Yes. Lyme disease testing may still provide useful information years later, although diagnosis is based on symptoms, exposure history, examination findings, and laboratory results.
Clinical Takeaway
Lyme disease can remain unrecognized for years when symptoms are intermittent, testing is negative early, or symptoms are mistaken for other medical or psychiatric conditions.
A careful exposure history should include previous residences, vacations, travel, outdoor events, and other places where a tick bite might have occurred—not only where the patient currently lives.
Published studies and case reports describe patients who remained ill for years before receiving the correct diagnosis. Early recognition and timely treatment remain important for reducing the risk of long-term complications.
Related Articles
Persistent Lyme Disease Overview
Mechanisms Behind Persistent Lyme Disease
References
- 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.
- Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
- Cameron DJ. Consequences of treatment delay in Lyme disease. J Eval Clin Pract. 2007;13(3):470-472.
- 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. 2001;345(2):85-92.
- 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.
- 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. 2015;61(12):1800-1806.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
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.
I’m convinced as a child, I had Lyme disease. I had a tick in my head when I was maybe 11, and then a few months later I had bells palsy. All the Drs told us it was probably from sleeping with a small fan on my bed and the wind blowing in my ear. Fast forward to now, 30 years later, and I have been diagnosed with Psoriatic arthritis. I do have very mild psoriasis, so that was what the Dr went with. However, after stumbling upon an article talking about the bells palsy being associated with tick bites, it got me to thinking. I’ve was diagnosed with bipolar as a teen, and from early on, I had joint pain. I am now 43, my knees are shot, my hips ache all the time, my feet hurt all the time, and I feel oh so tired all the time, no matter how much rest I get. I have been on biologics that last couple years, and they do help with some of the pain. I have been t sted for Lyme, and it always comes back negative….but I am convinced all of this is from the tick bite. It’s hard to get anyone to take me seriously when I have tried to further testing, etc.
I have shared the Lyme Disease Science blogs for discussion.
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.
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.
I have patients who have benefited after resuming treatment for a tick borne infection.
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 .
I have patients who knew they were sick but no one addressed the issues.
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.
It is easy to get lost in the system.
Have you seen people afflicted with tremors as a result of tick borne infection?
I have seen tremors in some Lyme disease patients. There are so many other causes of tremors.
Thank you.
What are your thoughts on band 41 being IND through Igenix for IGA and IGG?
There are so many healthy bacteria that cause an indeterminate 41 band. I have to use clinical judgement rather than the test.
Yes I had tremors and a few people I’ve met with lyme also had. Went away with treatment
I read there can be neuropsychiatric and neurological issues years after developing lime disease. First of all is this true? What’s the name of the blood tests that should be done to test for them? How is it treated?
I got lime disease and was treated with antibiotics but I’m afraid I have these other issues dormant.
I have patients with these issues for years. Others have described the same problems in the literature. I prefer antibodies tests for common tick borne infection to be determined by the suspected tick and where my patient lives.
I remember 3 seperate occasions when I was bit by a tick growing up. Ages around 7-11, 2 on my scalp and 1 near the top of my pelvic area near where my thigh meets my torso. Since all 3 times were in places that I didnt see right away, they were able to go unnoticed for at least 2 days before coming across them when bathing. My symptoms didnt really start until my early 30s-late 20s and in the beginning it was debilitating joint and neck pain. About 8 or 9 years later, it just stopped causing all the aches and moves on to other symptoms. I haven’t been diagnosed but am almost positive its Lyme. Is it common for some of the Lyme symptoms to stop, and new ones begin? It was so strange, I woke up one day and realized I hadn’t been taking ibuprofen like I used to and my joint and neck pain was no longer a thing.
Hi Sandra:
Sorry to read about the medical issues you’re having. I have a similar storyline though I remember the day at around 10 or 11 years old my barber found three ticks in my head. My father yanked them out, treated with alcohol and that was it. I also in the ensuing months, had unbearable pain in my shoulders. It was so bad I could not sleep. The family doctor attributed it to “growing pains.” This was followed, I don’t remember the exct timeline by chronic fatigue. Blood tests were negative but the doctor did notice that my spleen was enlarged and thought I may have had mononucleosis. Over the years I have had headaches, heart issues, blah, blah. Lyme tests all negative and my doctors have all doubted my diagnosis even with my memory of the tick bites. I have read about advanced Lyme tests and was curious if you knew anything about how to find a lab that tests for Lyme using these new tests? Thanks for any information and ignore my stupid sounding old AOL email address. I’ve had it for so long that changing it would make my life even more complicated than it is.