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 from Johns Hopkins examined whether patients with early Lyme disease could be identified sooner when symptoms such as fatigue, pain, and cognitive complaints persist after treatment.
In the Archives of Clinical Neuropsychology, investigators reported that some patients continued experiencing severe fatigue, pain, and symptoms associated with post-treatment Lyme disease syndrome (PTLDS) six months after completing a three-week antibiotic course for erythema migrans. [4]
Among 107 patients followed in the study, 6 patients (6%) met criteria for PTLDS. [4]
Common ongoing symptoms reported after treatment include fatigue, pain, cognitive difficulties, and reduced daily functioning.
The authors suggested that patients reporting fatigue, pain, and depression on standardized measures may benefit from early behavioral and medical interventions aimed at improving daily functioning.
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 wrote that patients with ongoing symptoms could also be referred for neuropsychological evaluation when clinically appropriate. [4]
Who is at risk for persistent symptoms after Lyme disease?
Researchers continue studying why some individuals recover quickly while others develop persistent fatigue, pain, cognitive complaints, or functional impairment after treatment. Risk factors remain under investigation.
Identifying patients at higher risk early may help guide follow-up decisions and symptom monitoring after treatment.
Could earlier re-treatment identify higher-risk patients?
Questions remain regarding which patients are most likely to develop persistent symptoms and whether earlier intervention changes outcomes.
According to Aucott and colleagues, animal studies have suggested bacterial persistence or retained antigens after treatment may contribute to ongoing symptoms in some patients. [5]
“The use of short-term antibiotic retreatment in the early, post-treatment phase of Lyme disease has yet to be formally tested, although it may be widely applied in clinical practice,” wrote Aucott. [5]
Patients who required additional treatment
Bechtold and colleagues identified 8 patients who received early re-treatment after the initial doxycycline course.
Among those cases:
- Five patients developed new objective findings, including neuropathy
- Three patients had persistent erythema migrans or developed additional rashes
- Only 2 of the 6 PTLDS patients underwent re-treatment
Most patients with severe fatigue and pain were not re-treated. [4]
Frequently Asked Questions
What are persistent symptoms after Lyme disease?
Persistent symptoms may include fatigue, pain, cognitive difficulties, sleep problems, and reduced daily functioning after recommended treatment.
What is post-treatment Lyme disease syndrome?
PTLDS describes persistent symptoms that continue after standard treatment in a subset of patients.
Why do some Lyme disease patients remain sick after treatment?
The reasons remain uncertain and may involve immune responses, inflammation, bacterial remnants, or other biologic mechanisms that continue to be investigated.
Did Johns Hopkins study persistent Lyme symptoms?
Yes. Johns Hopkins researchers followed patients after early Lyme disease treatment and evaluated symptom persistence over time.
Can fatigue continue after Lyme disease treatment?
Yes. Fatigue was among the commonly reported symptoms in patients with persistent symptoms following treatment.
Clinical Takeaway
Persistent symptoms after Lyme disease remain an area of active investigation. Studies from Johns Hopkins suggest earlier identification of fatigue, pain, depression, and new objective findings may help identify patients who need closer monitoring.
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
Fatigue in Lyme disease
Recovery from Lyme disease
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 Post-Treatment Lyme Disease Syndrome: A Prospective Clinical Cohort Study. Clin Vaccine Immunol. 2016.
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.