Lyme Disease Insomnia and Sleep Problems
Lyme disease may disrupt sleep quality and recovery
Pain, neurologic symptoms, and stress may contribute to insomnia
Persistent sleep problems may continue in some patients after treatment
Lyme disease insomnia and sleep problems are common complaints among patients with early and persistent Lyme disease. Difficulty falling asleep, frequent awakening, nightmares, and nonrestorative sleep may worsen fatigue, cognitive symptoms, and daytime functioning.
Researchers studying patients with early Lyme disease found that sleep disturbances were frequently reported even after standard antibiotic treatment. Some patients improved over time, while others with persistent symptoms continued to experience significant sleep disruption.
Learn more about broader symptom patterns in Lyme disease symptoms.
Sleep problems are common in early Lyme disease
Weinstein and colleagues evaluated sleep quality in patients treated for early Lyme disease after an erythema migrans rash. Participants received a standard 3-week course of doxycycline. [1]
Before treatment began, sleep disturbances were already common.
According to the authors, “41% of participants with early LD reported new-onset difficulty sleeping that they associated with the LD illness process.”
Some patients specifically linked their sleep problems to pain and nighttime discomfort.
Persistent Lyme symptoms may affect sleep quality
While many participants improved over time, several patients with persistent symptoms continued to report poor sleep quality one year later.
These individuals experienced moderate to severe fatigue, musculoskeletal pain, cognitive difficulties, and impaired daily functioning.
The authors found that PTLDS participants reported:
- Worse overall sleep quality
- More severe fatigue
- Greater functional impairment
- Increased cognitive-affective depressive symptoms
- Difficulty sleeping due to pain
- Bad dreams and nighttime awakening
Sleep disruption may overlap with other persistent symptom clusters including fatigue in Lyme disease and brain fog in Lyme disease.
Can Lyme disease cause insomnia?
Insomnia in Lyme disease may result from multiple overlapping factors.
Patients may experience:
- Pain that interferes with sleep
- Autonomic dysfunction
- Night sweats or chills
- Anxiety or stress related to chronic illness
- Neurologic hyperarousal
- Disrupted sleep cycles
Some patients with persistent symptoms also report dysautonomia, palpitations, temperature instability, and nighttime symptom fluctuations. Learn more about autonomic dysfunction in Lyme disease.
Sleep quality may influence recovery
Poor sleep may worsen daytime fatigue, concentration problems, mood symptoms, and pain sensitivity.
Although the study did not determine whether persistent sleep problems were caused by ongoing infection, inflammation, immune dysfunction, or other mechanisms, the findings suggest that sleep quality remains an important clinical issue in patients with ongoing symptoms.
The authors also emphasized the importance of screening for depressive symptoms in patients with persistent Lyme-related illness.
Clinical Perspective
Sleep disruption in Lyme disease is often multifactorial.
Some patients improve as the acute illness resolves, while others continue to experience insomnia, nonrestorative sleep, pain-related awakening, or nighttime neurologic symptoms long after initial treatment.
Because poor sleep may worsen fatigue, cognitive dysfunction, mood symptoms, and pain perception, careful evaluation of sleep quality may help clarify the broader symptom burden affecting recovery.
Frequently Asked Questions
Can Lyme disease cause insomnia?
Yes. Lyme disease may contribute to insomnia through pain, neurologic symptoms, autonomic dysfunction, stress, and nighttime symptom fluctuations.
Is poor sleep common in Lyme disease?
Yes. Studies have found that many patients with Lyme disease report new-onset sleep disturbances during illness.
Can sleep problems continue after Lyme treatment?
Some patients with persistent symptoms after treatment continue to experience poor sleep quality, fatigue, and cognitive difficulties.
What sleep symptoms are reported in Lyme disease?
Patients may report insomnia, frequent awakening, nightmares, pain-related sleep disruption, and nonrestorative sleep.
Can autonomic dysfunction affect sleep in Lyme disease?
Yes. Dysautonomia may contribute to nighttime palpitations, temperature instability, hyperarousal, and disrupted sleep patterns.
Clinical Takeaway
Lyme disease insomnia and poor sleep quality may significantly worsen fatigue, cognition, pain, and daytime functioning.
Although some patients improve following treatment, others continue to experience persistent sleep disruption associated with ongoing symptom burden.
Recognizing sleep problems in Lyme disease may help clinicians better understand the broader neurologic and functional impact affecting recovery.
Related Articles
Neurologic Lyme Disease
Delayed Lyme Disease Diagnosis
Lyme Disease Misdiagnosis
Recovery From Lyme Disease
Post-Treatment Lyme Disease Syndrome
References
- Weinstein ER, Rebman AW, Aucott JN, Johnson-Greene D, Bechtold KT. Sleep quality in well-defined Lyme disease: a clinical cohort study in Maryland. Sleep. 2018;41(2).
- 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.
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
Um…Dr. Cameron…I find this article to be tremendously confusing as a piece indicating by its title that it is about sleep problems in Post Treatment Lyme disease patients. I have had Lyme disease for 15 years and I still do not sleep. I have never met a person whom you described as an “ideally treated” Lyme disease patient. I know possibly hundreds of people who are in the group you excluded from your article. What we have is called CHRONIC LYME DISEASE and that is what everyone who is sick and suffering with Lyme disease that I have ever known, or known of, has. We are the ones who are in the undeclared epidemic in this country. We cannot sleep either, only our insomnia has lasted 15, 20 years. I recognized immediately that Johns Hopkins’ labels on this disease appear to follow the Infectious Diseases Society of America’s (IDSA) characterizations of the disease. I, therefore, would not be seeking treatment from Johns Hopkins for Lyme disease. I am “post treatment.” My treatment was received four years after becoming ill, five months after finally being diagnosed and just prior to my dying from never being diagnosed by by a platoon of doctors. I recall no tick bite. My treatment was four months of IV antibiotics 700 miles from my home and, but for that treatment, I would be dead. You state that consideration was given to patients like me in a previous article. I AM Lyme disease as it exists in millions in this country right at this moment. I am in despair after reading this article. It is evident that the misinformation and denial of the truth about this disease continues. How much public money has gone to Johns Hopkins for Lyme disease?
Thanks for sharing your concern with the label “Post Treatment Lyme Disease Syndrome” “PTLDS” I have never liked the term since introduced by the Infectious Society of America (IDSA) in 2006. The term implies the the infection has cleared. I do not like the term “ideally treated” Lyme patient where consists of a single 3 week course of doxycycline. There are too many treatment failure, even among patients enrolled in the Hopkins trial.
I was not an author or researcher in the Hopkins study. I shared my review of the Hopkins study to offer some insight into the sleep issues I see in my patients.
Rebecca, I second what Dr. Cameron said. He has treated me twice for Lyme, and each time, treatment continued until a full month after all symptoms had disappeared. He uses a miraculous symptom rating scale, the likes of which I have never seen anywhere else, and it is global in nature, acknowledging the myriad symptoms that come with Lyme. He isn’t satisfied till the patient’s symptoms are gone. He’s an excellent Lyme doctor if you want your treatment to consist of antibiotics. The alternative remedies are approved of but left to the patient to undertake. Dr. Cameron does not at all minimize the Lyme patient’s ongoing suffering and cares very deeply that the physician continue working with the patient to reduce and eliminate suffering. I’m so sorry that your Lyme Disease was diagnosed so late in time relative to the onset of symptoms.
I suspect Dr. Cameron’s point in posting this article is not to endorse the Johns Hopkins’ view of Lyme diagnosis and treatment, but rather to highlight that one of the many very troubling symptoms of Lyme is inadequate sleep which can remain even after the customary and usual treatment. In fact, this article actually undermines the J.H. model because if the reader connects the dots, they should and would realize that treatment has perhaps been inadequate. (I am concerned as to why the J.H. doctors can’t connect the dots on this when it’s staring them in the face!) Rest assured, Dr. Cameron’s model for Lyme diagnosis and treatment is not identical to the J.H. model. However, the research emerging from all varied sources can be helpful. This research can add to the symptom set that typical doctors ask about when their patients come in stating they may have Lyme Disease. Usually, “poor sleep” isn’t something they ask about (but it’s on Dr. Cameron’s symptom severity scale). I feel he’s publishing helpful information with this article. He cannot misrepresent what the researchers actually said.
I completed 35 Hyperbaric Oxygen Therapy sessions with infrared and I noticed that I slept a whole lot better. Because of this I am seriously thinking about purchasing a hyperbaric oxygen therapy chamber to use at home.
It must be stressed continually that each case is completely unique.
Any and all studies have some value, unfortunately for many many patients, all the info is simply overwhelming because we are so depleted in so many ways.
It’s incredibly taxing.
Ms. Williams makes some very excellent points. The fact that researchers are so narrow minded is disturbing. Chronic Lyme is a completely different animal & for the researchers to suggest that antibiotics are the cure all is absurd & ignorant. Using a sleep tracker, we have always referred to horrible sleep as the disease having a party because it knows it has a chance to disrupt your treatment plans. A Chronic Lyme patient goes through different cycles of the disease based off of the fact that the disease adjusts to what the patient is doing to combat it. Every aspect of a chronic Lyme patient’s day impacts the disease. When you adjust, the disease does it’s best to counteract it. It goes through phases & when you figure one part out, it switches tactics. That is why the patient has to evolve & outmaneuver the disease. If there are not long-term studies of chronic Lyme patients, no progress will be made when it comes to understanding what is truly going on inside the chronic Lyme patient’s body.
Dr. Cameron, please forgive me for mistaking you for the author of the article. I am truly sorry. My upset, then, is with Johns Hopkins for the writing, arrangement and terminology used in the article and for the general orchestration of its information in such a manner as to segregate and highlight only the acute cases. By highlighting acute cases to which to apply valuable researchers’ information, such as yours, the attention is deflected from the chronic cases, which are relegated to one line in the article, a footnote and no link to the article on chronic patients’ insomnia. I remember, several tines, looking at a photograph and being confused that the doctor has 30 years’ experience. I struggled with believing that was the truth. Again, I deeply regret blaming you and appreciate your affirmation of my concern over the terminology used. J.H.’s article will be made known to Lyme groups of which I am a member. The average membership in some of these groups is 10,000 people. They would be chronic patients. I will not relate this information further without clearly noting that you are not the author and that you did not provide the terminology as it is used therein. Our concerns are with J.H. and what it is doing. That publication, I now believe, is intentionally misleading as to the author and in the manner in which the information is presented. It is likely J.H., itself, following IDSA Guidelines which are no longer public, but apparently still at work.. I am very interested in the money funding the J.H. Lyme disease center and the sources of that funding. I am not interested in negatively affecting any doctor who has devoted this much of his life to treating Lyme disease patients. We chronic patients will protect and defend our Lyme-learned doctors in ways you may never have seen. I have. What I cannot do, in good conscience and in the year 2018, is allow a new source of misinformation on this Lyme disease epidemic to promulgate or disseminate via a respected medical institution more misinformation to the public about the epidemic, possibly using public funds. That would make it no different from my living in Nazi Germany in 1933. Thank you and everyone else who commented about this. Thank you for the years of dedicated treatment and care you provided to Lyme patients, especially the children. Anyone who perpetrates the fraud surrounding Lyme disease will be stopped. They arrogantly miscalculate the determination, intelligence and resources of those affected.
Please do not use the term Post Treatment Lyme Disease Syndrome. The term is intellectual dishonest and does patients a disservice. Thanks for all the other good work you do!
My son has been suffering for years. Stress is overwhelming to him and lack of sleep unbelievable and sometimes unbearable. He takes much medication from his doc. With using a crap device could he also take time release 3mg melatonin?
Sleep can be a major problem in Lyme disease. It sounds as if his doctor is trying to help. I could not tell from the description if Lyme disease is a factor.
Have noticed worse tiredness in middle of nite or when I wake up with my Lyme. It’s really bad. It’s like I have Lyme tired then this
What is considered poor sleep? 2 nights per week without it? Every other night?
I am sorry to hear you are having so many problems with sleep. There are so many different issues related to sleep. I often find patients who cannot start sleep, cannot stay sleep, or wake up exhausted.