Lyme Neuroborreliosis Long-Term Symptoms: Many Patients Remain Ill
Lyme neuroborreliosis long-term symptoms can persist for years after treatment, affecting quality of life and daily function. Despite ongoing debate, multiple studies document chronic manifestations of Lyme disease, including neurologic and systemic symptoms. :contentReference[oaicite:0]{index=0}
These manifestations include chronic neurologic Lyme disease, Lyme encephalopathy, neuropsychiatric Lyme disease, and post-treatment Lyme disease syndrome (PTLDS).
Patients often report profound fatigue, chronic pain, and reduced quality of life.
Study of Treated Lyme Neuroborreliosis Patients
Dersch and colleagues studied 30 adults with confirmed Lyme neuroborreliosis treated at the University of Freiburg between 2003 and 2014.
Patients met strict diagnostic criteria, including:
- Compatible neurologic symptoms
- CSF pleocytosis
- Antibodies to Borrelia burgdorferi in serum and CSF
- Elevated CSF/serum antibody index
The clinical presentations varied and included:
- Polyradiculoneuritis (50%)
- Cranial nerve disorders
- Meningitis
- Encephalomyelitis and myelitis
- Vasculitis
Persistent Symptoms Years After Treatment
Seventeen of the 30 patients (57%) reported residual symptoms an average of 5.7 years after antibiotic treatment.
Reported symptoms included:
- Pain
- Ataxia
- Sensory disturbances
- Cranial nerve dysfunction
- Spastic gait
- Fatigue
- Micturition disorders
Many patients experienced more than one symptom.
Severe fatigue was common, with an average Fatigue Severity Scale (FSS) score of 4.29—above the threshold for clinically significant fatigue.
Impact on Quality of Life
Patients with persistent symptoms had significantly lower quality of life scores compared to those who recovered.
This highlights the long-term burden of Lyme neuroborreliosis, even after standard antibiotic treatment.
Interpreting the Findings
The authors concluded that their results did not support a classic “post-Lyme syndrome” characterized by severe fatigue or cognitive impairment.
However, this interpretation may underestimate the clinical impact of persistent symptoms.
The data show that more than half of patients continued to experience significant symptoms and reduced quality of life years after treatment.
Additionally, the study did not assess the full range of cognitive symptoms described in other research, including NIH-sponsored trials of Lyme encephalopathy.
Supporting Evidence from Other Studies
Other research has reported similar findings:
- 34% to 62% of patients in U.S. cohorts reported persistent symptoms years after treatment
- 28% of patients remained ill in a systematic review of 48 clinical trials
These findings reinforce that long-term symptoms are common in Lyme disease.
Clinical Perspective
Lyme neuroborreliosis can result in persistent symptoms that significantly impact patients’ lives.
Clinicians should recognize that a substantial proportion of patients remain symptomatic after treatment and may require ongoing evaluation and support.
Further research is needed to better understand mechanisms of persistence and to improve long-term outcomes.
Sources:
- Wormser GP et al. Clin Infect Dis, 2006.
- Feder HM et al. N Engl J Med, 2007.
- Logigian EL et al. N Engl J Med, 1990.
- Logigian EL et al. J Infect Dis, 1999.
- Fallon BA et al. Neurology, 2008.
- Fallon BA et al. Am J Psychiatry, 1994.
- Klempner MS et al. Vector Borne Zoonotic Dis, 2002.
- Krupp LB et al. Neurology, 2003.
- Aucott JN. Infect Dis Clin North Am, 2015.
- Dersch R et al. J Neurol, 2015.
- Asch ES et al. J Rheumatol, 1994.
- Shadick NA et al. Ann Intern Med, 1994.
- Dersch R et al. 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.