Lyme Neuroborreliosis Long-Term Symptoms: Many Patients Remain Ill
Some patients remain ill after Lyme neuroborreliosis treatment
Fatigue, pain, and neurologic symptoms may persist for years
Quality of life may remain impaired despite antibiotic therapy
There are physicians who continue to question the existence and severity of chronic manifestations of Lyme disease despite a growing number of cases described in the medical literature.¹⁻⁹
These reports include chronic neurologic Lyme disease, Lyme encephalopathy, neuropsychiatric Lyme disease, post-treatment chronic Lyme disease, post-Lyme disease symptoms, and post-treatment Lyme disease syndrome (PTLDS).³⁻⁹
The severity of persistent symptoms may include poor quality of life, profound fatigue, chronic pain, cognitive complaints, and neurologic dysfunction.⁴⁻⁸
Study of Lyme Neuroborreliosis Long-Term Symptoms
Dersch and colleagues evaluated 30 adults with definite Lyme neuroborreliosis (LNB) treated at the Medical Center of the University of Freiburg between 2003 and 2014.¹⁰
Patients met strict diagnostic criteria including compatible neurologic symptoms, cerebrospinal fluid (CSF) pleocytosis, antibodies against Borrelia burgdorferi in serum and CSF, and a CSF/serum antibody index greater than or equal to 2.¹⁰
The spectrum of neurologic Lyme disease presentations included:
- Polyradiculoneuritis (50%)
- Isolated cranial nerve disorders
- Meningitis
- Encephalomyelitis
- Myelitis
- Vasculitis
The patients were treated an average of 4.1 weeks after symptom onset using ceftriaxone, doxycycline, or both antibiotics.¹⁰
Persistent Symptoms Years After Treatment
Seventeen of the 30 patients (57%) reported residual symptoms an average of 5.7 years after antibiotic treatment.¹⁰
Persistent symptoms included:
- Pain
- Ataxia
- Sensory disturbances
- Cranial nerve disorders
- Spastic gait
- Fatigue
- Micturition disorders
Several patients experienced more than one persistent symptom.¹⁰
The average Fatigue Severity Scale (FSS) score among patients with residual symptoms was 4.29, exceeding the threshold used to define severe fatigue in Krupp’s NIH-sponsored STOP-LD trial.⁸
Quality of Life Remained Impaired
Patients with persistent Lyme neuroborreliosis symptoms also reported lower quality-of-life scores.
“Patients with residual symptoms had statistically significantly lower measures of quality of life, as measured with the physical component summary of the SF-36 compared to patients without residual symptoms,” Dersch reported.¹⁰
The authors concluded that many patients did not develop severe depression or global cognitive impairment.¹⁰
However, broader cognitive symptoms commonly reported in Lyme encephalopathy were not fully evaluated in the study.⁵
The findings still demonstrated that many patients experienced debilitating fatigue and impaired physical functioning years after treatment.¹⁰
Other Studies Also Found Persistent Symptoms
Two retrospective cohort studies in the United States described persistent symptoms in 34% to 62% of antibiotically treated Lyme disease patients years after treatment.¹¹⁻¹²
Meanwhile, a systematic review of 48 clinical trials found that 28% of Lyme neuroborreliosis patients remained ill years after treatment.¹³
These studies reinforce that recovery timelines after neurologic Lyme disease may vary considerably.
Learn more about neurologic Lyme disease.
Learn more about post-treatment Lyme disease syndrome (PTLDS).
Why Persistent Symptoms Remain Controversial
The mechanisms behind persistent Lyme neuroborreliosis symptoms remain debated.
Researchers have explored several possible explanations including immune dysregulation, neuroinflammation, autonomic dysfunction, residual tissue injury, persistent infection, and overlapping chronic illnesses.
Not all studies reach the same conclusions regarding severity, mechanisms, or treatment implications.
However, persistent fatigue, pain, neurologic symptoms, and reduced quality of life continue to be reported in subsets of patients years after treatment.
Frequently Asked Questions
What is Lyme neuroborreliosis?
Lyme neuroborreliosis refers to neurologic involvement caused by Lyme disease affecting the brain, spinal cord, cranial nerves, or peripheral nervous system.
Can symptoms persist after Lyme neuroborreliosis treatment?
Yes. Some patients report persistent fatigue, pain, sensory symptoms, gait problems, or reduced quality of life years after treatment.
What symptoms may persist after neurologic Lyme disease?
Persistent symptoms may include fatigue, pain, ataxia, sensory disturbances, cognitive complaints, cranial nerve symptoms, and gait abnormalities.
Does persistent Lyme neuroborreliosis remain controversial?
Yes. The mechanisms and interpretation of persistent symptoms after treatment remain debated within the medical community.
Can Lyme neuroborreliosis affect quality of life?
Yes. Several studies have reported reduced physical functioning and impaired quality of life in some patients after treatment.
Clinical Takeaway
Persistent symptoms following Lyme neuroborreliosis treatment have been documented in multiple studies and may include fatigue, pain, gait abnormalities, sensory disturbances, and reduced quality of life.
Although the mechanisms remain debated, recovery after neurologic Lyme disease does not appear uniform for all patients.
Clinicians evaluating persistent neurologic symptoms after Lyme disease should recognize that some patients remain significantly impaired years after treatment.
Related Articles
These related articles explore persistent symptoms, delayed diagnosis, recovery variability, and chronic neurologic complications associated with Lyme disease.
Lyme disease misdiagnosis
Recovery from Lyme disease
Persistent Lyme disease
Delayed Lyme disease diagnosis
Lyme disease symptoms guide
References
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of Lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
- Feder HM Jr, Johnson BJ, O’Connell S, et al. A critical appraisal of chronic Lyme disease. N Engl J Med. 2007;357(14):1422-1430.
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
- 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.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
- Klempner MS. Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease. Vector Borne Zoonotic Dis. 2002;2(4):255-263.
- Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
- Aucott JN. Posttreatment Lyme disease syndrome. Infect Dis Clin North Am. 2015;29(2):309-323.
- Dersch R, Sarnes AA, Maul M, et al. Quality of life, fatigue, depression and cognitive impairment in Lyme neuroborreliosis. J Neurol. 2015.
- Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol. 1994;21(3):454-461.
- Shadick NA, Phillips CB, Logigian EL, et al. The long-term clinical outcomes of Lyme disease: a population-based retrospective cohort study. Ann Intern Med. 1994;121(8):560-567.
- Dersch R, Sommer H, Rauer S, Meerpohl JJ. Prevalence and spectrum of residual symptoms in Lyme neuroborreliosis after pharmacological treatment: a systematic review. J Neurol. 2015.
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
The ignorance of many (too many) of Dr. Cameron’s colleagues here in Holland is staggering. They should be prosecuted.
So what’s the outcome. Treatable or no. Is it gone even though symptoms are still there and quality of life is poor .
The 30 subjects were treated an average of 4.1 weeks after onset of symptoms with either ceftriaxone, doxycycline or subsequently with both antibiotics. The authors did not address whether additional treatment would have been helpful.
I find it astonishing that there are patients across the nation, that have been aggressively treated for Covid 19, and now a mere 6-8 months later, they are still not recovering well, suffering any number of symptoms. In just this matter of “months’ they have actually defined them as “Long Haulers”, and working to determine appropriate treatment, rehab, etc. We have screamed & begged for recognition, validation & resolution for years, for Decades. Yet, they still maintain an ignorant stance on Lyme. But, already the red flags have been raised for these ‘Long Haulers. They are a diagnosed, validated group of patients. I sincerely wish them assistance, treatment & recovery. But, I am jealous, yes I am! I pray these Drs don’t end up rejecting this growing set of survivors, as they did with us.
Hi,
Exactly, thinking the same here.
We have a boatload of issues, have been relapsing for many years until and still through now 6 years of going after these invaders.
Psychological it has been crushing to many of us because of the denial and ignorance of the medical community in general correlating to our families and acquaintances wonder if doctors couldn’t find anything wrong.
Hang in their and we might have to push some of these long haulers to the dinner table, when able.
MK
I am 2 years post chronic lyme treatment. I had a lyme litterate doc and took antibx, microbials, etc…. for 14 months. I suffer a number of issues and have a poor quality of life. Is the lyme fully treated? Is there anything I can do? I have lost the last 13 years of my life. Now do I have to lose the rest?
I find it hard to be sure there is not a persistent infection behind the symptoms. I follow patients who have residual symptoms. I encourage them to arrange consultations to rule out other illnesses. I also have patients who benefit from a change in treatment. Of course, there are doctors who oppose retreatment.
I was diagnosed with 3rd stage lyme after 2 years of illness in 1987…I had severe neurological problems; seizures, meningitis, catatonia , bells palsey, heart-block, mitral valve prolapse, variant angina, and all the other 50 symptoms you can get. Alot of those symptoms lasted a good 10 years. After intense antibiotic I.V. therapy and oral I went into remission though continued with heart problems and some relapses. Now, 34 years later at age 63…alot of my symptoms are back with the new addition of horrible TINNITUS, erratic b/p and afib, tremors and.the inability to handle ANY STRESS without getting sick, as well as any form of heat. Is it my Lyme or something else??? Getting more tests done now….don’t feel confident to get the covid vaccine…as my body over-reacts to EVERYTHING! Any feed-back would be greatly appreciated. THANK YOU
After
I have patients who have been well for years only to relapse or be reinfected. I also look for other illnesses. I have found retreatment helpful in some patients who remain ill after other evaluations. I realize the vaccine is a concern but so is a COVID infection. Everyone is trying to make these difficult decisions.
Tammy! (6/16/21) Your story sounds like mine!! I’ve had several PIC-lines and 2 central lines. I’m in my 60’s. I don’t know how long I was ill, before I was diagnosed with Lyme. Then 15 years later, I was tested with Igenix labs. I had Lyme, Rickettsia, and Babesia. I’m still positive for Lyme and Babesia. I have ear ringing and ear pain, tremors, light and sound sensitivities. And, I can’t remember where I put my last pair of glasses. I’d still be blonde, but I’m so sensitive to peroxide and bleach, I can’t use hair color. So, when does this end? I’m broke. I’m sick of being sick. I’m also sick of being sick from antibiotics. Dr. Cameron, what do we do?
I cannot determine whether there are any other treatment options without an evaluation. I should mention that treatment for Babesia is typically oral. I ask my patients to rule out other illnesses.