Can Lyme Disease Stay With You Forever?
Can Lyme disease stay with you forever? Although many patients improve with appropriate treatment, others experience ongoing symptoms that may persist for years.
A growing number of case studies and clinical reports continue to describe patients with chronic illnesses associated with Lyme disease.
These persistent symptoms are part of the broader discussion of Lyme disease recovery and the mechanisms of chronic illness following infection.
Following are several examples:
Chronic Neurologic Lyme Disease
In the New England Journal of Medicine, Logigian and colleagues described patients with chronic neurologic Lyme disease who had been ill for years.
Their symptoms included fatigue, poor sleep, cognitive impairment, irritability, headaches, lightheadedness, and joint pain. Some patients improved with antibiotic treatment but symptoms later reoccurred, while others failed treatment.
The authors expressed concern that treatment may not have eradicated the infection.
Neuropsychiatric Lyme Disease
Fallon and colleagues described patients with Lyme disease who were initially presumed to have psychiatric illness.
These patients were diagnosed with paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.
These reports highlight how neurologic Lyme disease may overlap with psychiatric and cognitive symptoms.
Lyme Encephalopathy
Fallon and colleagues also described individuals with Lyme disease who had been ill an average of nine years.
Many had failed two previous treatments, and some failed retreatment.
Post-Treatment Lyme Disease Syndrome (PTLDS)
Rebman and colleagues found that despite antibiotic treatment, patients with Post-Treatment Lyme Disease Syndrome (PTLDS) remained ill with pain, fatigue, impaired cognitive function, and poor functioning.
Persistent symptoms after treatment remain part of the broader discussion surrounding Post-Treatment Lyme Disease Syndrome.
Central Sensitization Syndrome and Pain
Researchers have described central sensitization syndrome in patients with PTLDS.
“The primary symptoms of central sensitization include pain, fatigue, and sensory hyperarousal.”
Hanna and colleagues also described a woman with PTLDS who experienced chronic severe pain.
Postural Orthostatic Tachycardia Syndrome (POTS)
Kanjwal and colleagues described five Lyme disease patients who developed Postural Orthostatic Tachycardia Syndrome (POTS).
These patients experienced fatigue, cognitive dysfunction, orthostatic palpitations, and episodes of near syncope or syncope.
The debilitating nature of these symptoms led to loss of employment or inability to attend school for some patients.
Autonomic symptoms such as dizziness, palpitations, and exercise intolerance are increasingly discussed within the framework of autonomic dysfunction in Lyme disease.
Pediatric Acute-Onset Neuropsychiatric Syndrome
In some individuals, Lyme disease has been associated with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), characterized by sudden neurologic or psychiatric symptoms.
Swedo and colleagues suggested further studies to determine whether Lyme disease could trigger PANS.
Severe Complications and Death
Although uncommon, severe complications can occur.
The CDC’s Morbidity and Mortality Weekly Report described five deaths due to Lyme carditis.
Yoon and colleagues described a 17-year-old man who died of Lyme carditis.
Another study reported a patient who died from the tick-borne illness Babesia.
Clinical Insight
After more than three decades treating Lyme disease, I have seen patients whose symptoms resolve quickly and others who struggle with persistent illness.
These reports highlight the need for continued research into the causes of chronic symptoms and the possibility that persistent infection may play a role in some patients.
Editor’s note: I am not in favor of the term Post-Treatment Lyme Disease Syndrome until there is a reliable test demonstrating the absence of persistent infection.
Frequently Asked Questions
Can Lyme disease symptoms last for years?
Yes. Published studies describe some patients who continue to experience fatigue, pain, cognitive impairment, autonomic dysfunction, and other symptoms years after infection.
Does persistent Lyme disease always mean active infection?
Not necessarily. Persistent symptoms may involve immune, neurologic, inflammatory, autonomic, or pain-related mechanisms. The role of persistent infection remains debated.
Can Lyme disease cause neurologic or psychiatric symptoms?
Yes. Studies have described cognitive impairment, mood symptoms, anxiety, panic attacks, and other neurologic or psychiatric manifestations associated with Lyme disease.
Can Lyme disease affect the autonomic nervous system?
Yes. Some patients develop autonomic symptoms including dizziness, palpitations, orthostatic intolerance, and Postural Orthostatic Tachycardia Syndrome (POTS).
Related Articles:
Post-Treatment Lyme Disease Syndrome
Autonomic Dysfunction in Lyme Disease
Autopsy Study Reviews Cases Due to Sudden Cardiac Death 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.
- Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
- Rebman AW, Bechtold KT, Yang T, et al. The clinical, symptom, and quality-of-life characterization of a well-defined group of patients with post-treatment Lyme disease syndrome. Front Med (Lausanne). 2017;4:224.
- Batheja S, Nields JA, Landa A, Fallon BA. Post-treatment Lyme syndrome and central sensitization. J Neuropsychiatry Clin Neurosci. 2013;25(3):176-186.
- Hanna AF, Abraham B, Hanna A, Smith AJ. Effects of intravenous ketamine in a patient with post-treatment Lyme disease syndrome. Int Med Case Rep J. 2017;10:305-308.
- Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiol J. 2011;18(1):63-66.
- Swedo SE, Leckman JF, Rose NR. From research subgroup to clinical syndrome: modifying the PANDAS criteria to describe PANS. Pediatrics & Therapeutics. 2012;2(2):113.
- Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac tropism of Borrelia burgdorferi: an autopsy study of sudden cardiac death associated with Lyme carditis. Am J Pathol. 2016;186(5):1195-1205.
- Yoon EC, Vail E, Kleinman G, et al. Lyme disease: a case report of a 17-year-old male with fatal Lyme carditis. Cardiovasc Pathol. 2015;24(5):317-321.
- Kwon HY, Im JH, Park YK, Durey A, Lee JS, Baek JH. Two imported cases of babesiosis with complication or co-infection with Lyme disease in Republic of Korea. Korean J Parasitol. 2018;56(6):609-613.
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
Very nice and helpful information to me. Thanks for sharing.
If a tick bite with a bulls eye goes untreated, can symptoms of Lyme Disease continue for many years?
Yes. It can be more difficult to treat Lyme disease if not treated.
I had Lyme disease perhaps 20 yr ago. was treated and all cleared up. then 2 yrs ago my joints looked like rheumatoid arthritis. RA and autoimmune panels were all negative. Responded to steroids’ any chance this could be the Lyme disease?.
I advise my patients to include a doctor experienced in treating chronic manifestations of Lyme disease in addition to hearing out a rheumatologist.
Don’t need a test to determine the absence of ongoing infection based on the name….it’s post treatment, not post eradication. Nothing suggests successful treatment, but treatment did occur.
I have contracted Lyme Disease 2 years ago without knowledge and treatment due to not having medical insurance and knowledge of such disesse.i have suffered many anxieties ( depression body scarring memory loss,irregular heart rates ,nerve issues headaches lack of sleep) among other complications. I’ve filed for disability and tried to get treatment but I’m being referred to different doctors each time never getting treatment but being told that everything that I’m experiencing is all in my mind but yet I experiencing actual physical pains. I d I nt kno what is to do at this point but to endure the process of the disease . I’m 59 years old who has always been a” happy go lucky type ” person but these days I’m experiencing a lot iof sadness..
I have patients who have benefited from consulting a doctor with experience treating chronic manifestations of Lyme disease. Some have had to go to a second doctor with experience as there are varying protocols.
I had late stage Lyme, and Mr Dr said it stays in your system, and I. Could have a recurrence without a tick bite, and need to go on antibiotics.. I believe I am having another recurrence, but the Dr who specialized in Lyme disease passed away, and now I have severe neck pain, and can’t find a Dr who treats or knows about Lyme treatments. Severe neck pain is a sign of Lyme. Whe t test can I get to find out if I am having Lyme..they did X-rays and say I have osteopenia, but the meds they gave voltaren topical gel are not working, and I believe I have a recurrence of Lyme. What test should I get, an E 1 blood test? Thank you.. no I never commented about Lyme disease
I have had to take an individualized approach. I typically include antibody test for Lyme, Ehrlichia, Anaplasmosis, Bartonella and Lyme and test to rule out other conditions.