Sleep Problems in Lyme Disease and PTLDS
A key pattern is sleep disruption. Sleep problems are common in early Lyme disease and may persist in some patients after treatment.
In a study by Weinstein et al., researchers evaluated sleep quality in Lyme disease patients who were “ideally treated” with a 3-week course of doxycycline for erythema migrans.
The study excluded individuals with more complex conditions, including prior Lyme disease, prolonged symptoms, autoimmune disorders, depression, bipolar disorder, chronic fatigue syndrome, fibromyalgia, and other chronic pain conditions.
Start here: Lyme disease fatigue and sleep symptoms
Sleep Disturbance in Early Lyme Disease
A key pattern is early onset. Sleep difficulties often begin during the initial phase of Lyme disease.
“41% of participants with early Lyme disease reported new-onset difficulty sleeping that they associated with the illness,” writes Weinstein.
Sleep disruption was frequently linked to pain, although daytime dysfunction was more difficult to distinguish from patterns seen in the general population.
By 6 months after treatment, average sleep scores for the group returned to levels similar to controls.
Persistent Sleep Problems in PTLDS
A key pattern is incomplete recovery. Some patients continue to experience significant sleep disturbance after treatment.
Six participants with post-treatment Lyme disease syndrome (PTLDS) had persistent symptoms for at least one year, including:
- Moderate to severe fatigue
- Musculoskeletal pain
- Cognitive difficulties
- Reduced daily functioning (based on SF-36 measures)
Post-treatment Lyme disease syndrome patients report sleep disturbances.
Sleep disruption in these patients was severe.
“PTLDS participants reported significantly worse global sleep and sleep disturbance scores and worse fatigue, functional impact, and more cognitive-affective depressive symptoms compared to poor-sleeping controls,” writes Weinstein.
- 4 of 6 patients had moderate to severe sleep difficulty related to pain
- 5 of 6 reported sleep disturbance due to bad dreams
- All showed higher fatigue, cognitive symptoms, and functional impairment
Sleep and Mood Symptoms
A key pattern is overlap. Sleep disruption, fatigue, and mood symptoms often occur together.
Among the PTLDS patients:
- 2 reported depressive symptoms
- 5 met criteria for clinically significant depression
The authors suggest these symptoms may reflect emotional distress related to chronic illness.
They recommend screening for depression in patients with persistent Lyme symptoms.
Clinical Interpretation
A key pattern is unresolved symptoms. Not all patients return to baseline after standard treatment.
This study defined “ideal treatment” as a single 3-week course of doxycycline and did not explore alternative explanations for persistent symptoms.
The term post-treatment Lyme disease syndrome (PTLDS) assumes infection has cleared, but there are no definitive tests to confirm this.
Other possibilities—including persistent infection or co-infection—were not addressed in this analysis.
See persistent symptoms after Lyme disease.
Clinical Takeaway
Sleep disturbance is common in early Lyme disease and often improves after treatment—but not always.
Some patients with PTLDS continue to experience severe sleep disruption along with fatigue and cognitive symptoms.
Persistent sleep problems may reflect broader ongoing illness and require further evaluation.
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.