Persistent Symptoms After Lyme Disease Following Treatment
Persistent symptoms may continue after treatment
Early identification may improve follow-up care
Researchers are studying who remains at risk
Ongoing symptoms after Lyme disease remain an important clinical challenge. Researchers examined whether patients with early Lyme disease could be identified sooner when symptoms such as fatigue, pain, and cognitive complaints persist following treatment.
In the Archives of Clinical Neuropsychology, Bechtold and colleagues followed 107 patients with early Lyme disease from diagnosis through six months after treatment. At the group level, patients generally improved. However, a small subgroup continued to experience substantial symptoms and functional decline. [4]
Six patients, representing approximately 6% of the study group, met the study criteria for post-treatment Lyme disease syndrome (PTLDS). [4]
Persistent symptoms reported after treatment may include fatigue, pain, cognitive difficulties, sleep problems, mood changes, and reduced daily functioning.
The investigators suggested that standardized measures of fatigue, pain, mood, and daily functioning may help clinicians recognize patients who need closer follow-up, additional evaluation, and individualized supportive or medical care.
Patients experiencing persistent symptoms may also overlap clinically with issues discussed in persistent Lyme disease symptoms, Lyme disease fatigue, and brain fog and cognitive symptoms.
Bechtold and colleagues also suggested that neuropsychological evaluation may be appropriate for selected patients with continuing cognitive or functional concerns. [4]
Who Is at Risk for Persistent Symptoms After Lyme Disease?
Researchers continue to study why some individuals recover promptly while others develop persistent fatigue, pain, cognitive complaints, or functional impairment following treatment.
In this prospective study, standardized symptom measures helped identify patients who continued to experience substantial symptoms after completing treatment. However, the number of patients who developed PTLDS was small, and no single symptom or test could reliably predict every patient’s outcome. [4]
Identifying continuing or worsening symptoms early may nevertheless help clinicians arrange closer follow-up, evaluate other possible causes, and address problems that interfere with daily functioning.
Can Biomarkers Identify Patients at Higher Risk?
Researchers have also investigated whether immune markers might help identify patients at risk for persistent symptoms.
In a separate prospective cohort study, Aucott and colleagues evaluated 76 patients with physician-documented erythema migrans and 26 healthy controls. The investigators found that elevated post-treatment levels of the T-cell chemokine CCL19 were associated with later clinical outcomes. [5]
The authors proposed that persistently elevated CCL19 might reflect an ongoing immune-driven response. However, CCL19 is still a research finding and is not an established clinical test for diagnosing PTLDS or determining treatment.
What Did the Study Show About Additional Treatment?
The Bechtold study was not designed to determine whether additional antibiotic treatment was effective. However, the investigators reported that 8 of the 107 participants received additional treatment after their initial doxycycline course.
Among those patients:
- Five developed new objective clinical findings, including neuropathy
- Three had persistent erythema migrans or developed additional rashes
- Only 2 of the 6 patients who ultimately met the study criteria for PTLDS received additional treatment
Most patients reporting severe fatigue and pain were not re-treated. Because treatment decisions were not randomized or standardized, the study cannot establish whether earlier re-treatment would have prevented persistent symptoms or changed long-term outcomes. [4]
Why Can Symptoms Continue After Treatment?
The mechanisms responsible for persistent symptoms remain uncertain. Researchers have examined several possibilities, including immune dysregulation, persistent inflammation, retained bacterial antigens, tissue injury, and other ongoing biologic processes.
The relative importance of these proposed mechanisms may differ among patients and remains under investigation. Persistent or recurrent symptoms also warrant an individualized clinical reassessment for objective manifestations, coinfections, treatment complications, and unrelated conditions.
Frequently Asked Questions
What are persistent symptoms after Lyme disease?
Persistent symptoms may include fatigue, pain, cognitive difficulties, sleep problems, mood changes, and reduced daily functioning following treatment.
What is post-treatment Lyme disease syndrome?
PTLDS is a research and clinical term describing persistent symptoms and functional impairment that continue for at least six months after recommended treatment in a subset of appropriately diagnosed patients.
Why do some Lyme disease patients remain sick after treatment?
The reasons remain uncertain. Researchers are studying immune responses, inflammation, retained bacterial antigens, tissue injury, and other biologic mechanisms. Other tick-borne or unrelated conditions may also need to be considered.
Can a blood test predict who will develop PTLDS?
Not currently. Research has identified associations between immune markers such as CCL19 and later persistent symptoms, but these findings have not established a routine diagnostic or predictive test.
Can fatigue continue after Lyme disease treatment?
Yes. Fatigue is one of the symptoms reported by some patients who remain ill following treatment. Persistent fatigue should be evaluated in the context of the patient’s other symptoms and overall clinical history.
Clinical Takeaway
Persistent symptoms after Lyme disease remain an area of active investigation. Although most participants in the Bechtold study improved following treatment, a small subgroup continued to experience fatigue, pain, and functional decline.
Standardized symptom assessment may help identify patients who need closer monitoring, additional evaluation, and individualized care. The study did not determine whether additional antibiotic treatment improved or prevented persistent symptoms.
Recovery timelines vary considerably, which is why symptom monitoring and follow-up remain important. See our Lyme disease recovery timeline.
Recognizing ongoing symptoms early may improve monitoring, support, and individualized treatment planning.
Related Articles
Post-treatment Lyme disease syndrome
Mechanisms behind persistent Lyme symptoms
References
- Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
- 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.
- 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.
- Bechtold KT, Rebman AW, Crowder LA, Johnson-Greene D, Aucott JN. Standardized Symptom Measurement of Individuals with Early Lyme Disease Over Time. Arch Clin Neuropsychol. 2017;32(2):129-141.
- Aucott JN, Soloski MJ, Rebman AW, et al. CCL19 as a Chemokine Risk Factor for Posttreatment Lyme Disease Syndrome: A Prospective Clinical Cohort Study. Clin Vaccine Immunol. 2016;23(9):757-766.
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
Why is it not recognized by most Dr’s? I googled for a Dr here in WV and out of 20 listested, all but 3 were psychiatrists? I was need Dr taken seriously at ER or Dr’s and never given antibiotics. Now I am bed ridden. Would give anything to be tested correctly. I have found black specks coming put of my skin using coconut oil, or peroxide, also small sperm shaped things in mouth after eating cherry popcycle, put samples in alcohol to preserve, coughed up fluke looking things, thrown up worms after ingesting turpentine and found worms in mucous from bowls. I have hard scabs all over head that are clear and red spots, when pick them off, if I am able to pry up, there’s black specks and hard salt like things. I have crusted scabs on my face and body I can’t get rid of. The rx I was given for cream costs 9000. This is insane and ruining my life…..
It can be difficult to find a diagnosis. There are a growing number of conditions that are yet to be explained even in the tick borne illnesses. Morgellon’s includes a rash but the etiology remains unknown. There are people with Morgellon’s who also have Lyme disease.
Until people live it they will not truly help you. They’re too concerned with discrediting Morgellons, to actually listen and see what is obviously happening right in front of them. They can take biopsies and see for them selves that you are living in a nightmare. Rather than researching for answer and options that have been successful for others with Morgellons, and talking with MD’s who’ve treated patients successfully, they just shrug you away with “we don’t know what’s causing this” or “it’s a psychosis and you’re doing this to yourself,” it’s difficult especially if you’re a woman, to be heard, believed, supported and helped with basic health problems. Keep searching, you’ll find someone who will actually put in effort to search for answers and help heal your symptoms and give you back a quality of life. I am sorry you’re faced with such skepticism.