Can Lyme Disease Stay With You Forever?
Can Lyme disease stay with you forever? Although many patients will improve with appropriate treatment, others will experience ongoing Lyme disease symptoms that may persist for years. A growing number of case studies continue to document 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. [1]
Their symptoms included fatigue, poor sleep, cognitive impairment, irritability, headaches, lightheadedness, and joint pain. Some patients improved with antibiotic treatment but symptoms eventually 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. [2] These patients were diagnosed with paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.
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. [3]
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.” [4] Hanna and colleagues also described a woman with PTLDS who experienced chronic severe pain. [5]
Postural Orthostatic Tachycardia Syndrome (POTS)
Kanjwal and colleagues described five Lyme disease patients who developed Postural Orthostatic Tachycardia Syndrome (POTS). [6] 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.
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 have suggested further studies to determine whether Lyme disease could trigger PANS. [7]
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. [8] Yoon and colleagues described a 17-year-old man who died of Lyme carditis. [9] Another study reported a patient who died from the tick-borne illness Babesia. [10]
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.
Related Articles:
Autopsy study reviews cases due to sudden cardiac death from Lyme disease
Could Ketamine help manage pain in patients with Post-treatment Lyme disease Syndrome?
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.