Can Lyme Disease Cause Insomnia? Sleep Problems and PTLDS
Insomnia is common in early Lyme disease
Pain, nightmares, and fatigue may disrupt sleep
Some sleep problems persist in patients with PTLDS
Can Lyme disease cause insomnia? Yes. Patients with Lyme disease may experience difficulty falling asleep, staying asleep, frequent nighttime awakenings, nightmares, or sleep that does not feel restorative.
In one prospective study, 41% of patients with early Lyme disease reported new-onset sleep difficulties that they associated with their illness. Although sleep improved for most participants following antibiotic treatment, significant sleep disruption continued in a small group of patients with post-treatment Lyme disease syndrome (PTLDS).
The study, “Sleep Quality in Well-defined Lyme Disease: A Clinical Cohort Study in Maryland,” examined sleep quality in patients who had been treated for an erythema migrans rash.
Sleep problems in early Lyme disease
The investigators defined “ideal treatment” as a three-week course of doxycycline for erythema migrans.
The study excluded patients with more complicated presentations, including those with:
- A self-reported history of previous Lyme disease
- Lyme disease symptoms lasting longer than three months
- Autoimmune disorders
- Clinical depression or bipolar disorder
- Chronic fatigue syndrome
- Fibromyalgia
- Other chronic pain disorders
Before treatment began, sleep disturbances were common. The authors reported that 41% of participants with early Lyme disease developed new difficulty sleeping that they associated with the Lyme disease illness.
There was also a trend toward patients having difficulty sleeping specifically because of pain. Daytime dysfunction was more difficult to interpret because sleep-related daytime problems are also common in the general population.
What does Lyme disease insomnia feel like?
Insomnia does not always mean being unable to sleep at all. Patients describe insomnia in different ways. Difficulty sleeping may involve one or more of the following:
- Difficulty falling asleep
- Repeatedly waking during the night
- Waking earlier than intended
- Difficulty returning to sleep
- Sleep disrupted by pain or other symptoms
- Nightmares or disturbing dreams
- Feeling unrefreshed despite spending enough time in bed
Sleep may be disrupted by musculoskeletal pain, neuropathic pain, headaches, autonomic dysfunction, anxiety, night sweats, temperature dysregulation, or other symptoms associated with Lyme disease and related tick-borne illnesses.
Patients with dizziness, heart-rate changes, sweating abnormalities, gastrointestinal symptoms, or temperature intolerance may also need to be evaluated for autonomic dysfunction associated with Lyme disease.
Sleep improved for most patients after treatment
For the early Lyme disease group as a whole, sleep scores returned to levels similar to those of the control group by six months after treatment.
This finding suggests that sleep problems accompanying an uncomplicated erythema migrans presentation may improve as the patient recovers. However, the results do not mean that every patient’s insomnia resolves within six months.
Although encouraging, these findings apply only to the narrowly defined group studied. The study’s restrictive enrollment criteria excluded patients with longer-standing symptoms, previous Lyme disease, chronic pain disorders, and several other conditions commonly encountered in clinical practice.
Sleep problems persisted in patients with PTLDS
Poor sleep did not resolve in six participants who met the study’s definition of PTLDS. These patients remained ill for one year following treatment and experienced moderate to severe fatigue, musculoskeletal pain, cognitive difficulties, or impaired daily functioning.
The PTLDS participants reported significantly worse overall sleep quality and greater sleep disturbance than control participants who also had poor sleep. They also had greater fatigue, cognitive-affective depressive symptoms, and functional impairment.
Among the six PTLDS patients:
- Four reported moderate to severe difficulty sleeping that they attributed specifically to pain.
- Five reported at least some difficulty sleeping because of bad dreams.
- The group had significantly greater fatigue and functional impairment.
- The group reported more cognitive-affective depressive symptoms than poor-sleeping controls.
Pain, nightmares, and depression may affect sleep
Pain appeared to be an important contributor to insomnia in several of the patients with persistent symptoms. Musculoskeletal pain can make it difficult to fall asleep, awaken patients during the night, and prevent restorative sleep.
Five of the six patients with PTLDS also reported some difficulty sleeping because of bad dreams. Although the study documented nightmares and sleep disruption, it did not establish why these symptoms occurred.
Two of the six PTLDS patients reported depressive symptoms, while five met criteria for clinically significant symptoms of depression on the study’s measurements.
The authors suggested that these symptoms could reflect emotional distress secondary to the overall illness. They recommended screening for depressive symptoms in patients with Lyme disease who report any type of persistent symptoms during the first year after exposure.
Pain, anxiety, depression, medication effects, sleep apnea, restless legs syndrome, thyroid disease, and other medical conditions may also contribute to insomnia. Persistent sleep problems therefore warrant a broader clinical evaluation rather than being attributed automatically to Lyme disease alone.
Can Lyme disease symptoms become worse at night?
Some patients report that pain, tingling, restlessness, sweating, headaches, or other symptoms become more noticeable at night. Symptoms may feel worse when external distractions decrease, when lying in one position aggravates pain, or when autonomic symptoms disrupt normal sleep regulation.
Night sweats, chills, air hunger, or relapsing fevers may also raise concern for Babesia and other tick-borne infections. However, nighttime symptoms are not specific to Lyme disease or babesiosis and require an individualized assessment.
Does insomnia mean Lyme disease treatment failed?
Insomnia alone cannot determine whether Lyme disease treatment succeeded or failed. Sleep disruption may continue because of pain, neurologic symptoms, mood changes, autonomic dysfunction, another sleep disorder, medication effects, or a separate medical condition.
The authors used the term post-treatment Lyme disease syndrome (PTLDS) to describe persistent symptoms following recommended antibiotic treatment. However, the study did not determine the biological cause of those symptoms.
There is no routinely available test that can confirm in every patient whether a tick-borne infection has been completely eradicated. The researchers also did not evaluate whether persistent infection or an untreated co-infection contributed to the ongoing symptoms after a single three-week course of doxycycline.
A persistent infection or co-infection had been considered as one possible explanation for ongoing symptoms in an earlier paper from the same research group.
Evaluating persistent insomnia after Lyme disease
Patients whose insomnia continues after Lyme disease treatment may benefit from an evaluation that considers:
- Ongoing musculoskeletal or neuropathic pain
- Night sweats, chills, or temperature dysregulation
- Anxiety, depression, or illness-related emotional distress
- Autonomic dysfunction
- Medication or supplement side effects
- Sleep apnea or other primary sleep disorders
- Restless legs syndrome
- Thyroid, hormonal, or metabolic disorders
- Persistent Lyme disease symptoms or another tick-borne infection
A careful evaluation is particularly important when insomnia occurs together with cognitive problems, severe fatigue, pain, neurologic symptoms, or a marked decline in daily functioning. These patients may require reassessment of the original diagnosis, treatment response, and alternative or contributing conditions.
The course of improvement varies from patient to patient. A broader discussion of symptom improvement, setbacks, and individualized follow-up is available in recovery from Lyme disease.
For a broader overview of insomnia, sleep apnea, circadian rhythm disruption, restless legs syndrome, and other sleep problems associated with Lyme disease, see Lyme Disease Sleep Disorders.
Frequently Asked Questions
Can Lyme disease cause insomnia?
Yes. A prospective study found that 41% of patients with early Lyme disease reported new-onset difficulty sleeping. Insomnia may involve trouble falling asleep, frequent awakenings, nightmares, pain-related sleep disruption, or unrefreshing sleep.
Does insomnia improve after Lyme disease treatment?
Sleep improved for most early Lyme disease patients in the study, with group sleep scores returning to control levels by six months. However, several patients with persistent symptoms continued to experience substantial sleep disturbances for at least one year.
Can a tick bite cause insomnia?
A tick bite itself does not ordinarily cause insomnia. However, an infection transmitted through a tick bite may lead to pain, fever, sweating, anxiety, neurologic symptoms, or other problems that interfere with sleep.
Can Lyme disease cause nightmares?
Nightmares were reported by five of the six PTLDS patients in this study. The study identified an association between bad dreams and sleep disruption but did not establish that Lyme disease directly caused the nightmares.
Can Lyme disease cause sleep apnea?
The study did not evaluate whether Lyme disease causes sleep apnea. Patients with snoring, gasping during sleep, witnessed pauses in breathing, morning headaches, or severe daytime sleepiness should be evaluated for sleep apnea and other primary sleep disorders.
Why are Lyme disease symptoms sometimes worse at night?
Pain, neuropathy, sweating, temperature changes, anxiety, and autonomic symptoms may become more noticeable or interfere more with sleep at night. However, worsening nighttime symptoms are not specific to Lyme disease and may have other causes.
Clinical Takeaway
Sleep disturbances are common in early Lyme disease and may include insomnia, pain-related awakenings, nightmares, and non-restorative sleep. Although sleep improved for most patients in this prospective study, substantial sleep disruption continued in a small group with PTLDS.
Persistent insomnia should prompt an evaluation for pain, autonomic dysfunction, depression, another sleep disorder, medication effects, and other tick-borne or medical conditions.
Ongoing sleep disruption can be an important part of a patient’s persistent illness and should not be dismissed simply because the initial course of antibiotic treatment has ended.
Related Articles
Learn more about persistent symptoms, diagnostic challenges, and the broader range of Lyme disease presentations:
Persistent Lyme disease: Symptoms, diagnosis, and treatment
Lyme disease symptoms guide
Delayed Lyme disease treatment and persistent symptoms
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.
- 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.