Poor sleep quality in Lyme disease patients
A study by Johns Hopkins University School of Medicine finds that patients with early Lyme disease and those with “Post-Treatment Lyme Disease Syndrome (PTLDS)” struggle with poor quality of sleep. Most early Lyme disease patients reported their sleep quality returning to normal after antibiotic treatment. But PTLDS patients did not, according to Weinstein, lead author of the study. 
The authors describe the quality of the sleep of Lyme disease (LD) patients who were “ideally treated” for an erythema migrans rash. They defined “ideally treated” as a 3-week course of doxycycline. Their study excluded individuals with more complicated presentations including self-reported history of prior LD, having Lyme symptoms for greater than 3 months duration, autoimmune disorders, clinical depression, bipolar disorder, chronic fatigue syndrome, fibromyalgia, and other chronic pain disorders.
Prior to starting treatment, sleep disturbances were common for early Lyme disease patients. “41% of participants with early LD reported new-onset difficulty sleeping that they associated with the LD illness process,” writes Weinstein. There was a trend for Lyme disease patients having trouble sleeping specifically due to pain. The higher daytime dysfunctional scores was difficult to separate out from sleep problems in the general U.S. population. “By 6 months post-treatment, participant sleep scores as a group returned to control levels,” Weinstein writes.Study finds 41% of early Lyme disease patients report new-onset difficulty sleeping. Click To Tweet
However, poor quality of sleep did not resolve for 6 participants with PTLDS. These patients remained ill for one year after treatment with moderate to severe fatigue, musculoskeletal pain, or cognitive difficulties, and poor function with daily life activities, as defined by a 36-item Short Form Health Survey (SF-36).
Their sleep disruption 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.
The 6 PTLDS patients were significantly sicker than controls in many areas:
- “Four out of six cases had moderate to severe trouble sleeping that they attributed specifically to pain.”
- “Five of six PTLDS cases indicated having some trouble sleeping due to bad dreams.”
- PTLDS patients had significantly higher levels of fatigue, greater cognitive-affective depressive symptoms and greater functional impact resulting from their symptoms.
Meanwhile, 2 of the 6 PTLDS patients reported depressive symptoms and 5 of the 6 PTLDS patients met the criteria for clinically significant symptoms of depression. The depression may be due to “emotional distress they are experiencing secondary to the overall illness,” the authors’ explain. But these findings suggest that it is important to screen “for depressive symptoms in individuals with LD who report persistent symptoms of any type over the first year after exposure,” writes Weinstein.
The authors did not discuss their use of the term Post-Treatment Lyme Disease Syndrome. The “Post-Lyme” term gives the impression that there is no persistent infection. However, there are no tests to determine whether a tick-borne infection has cleared. The authors did not discuss the possibility of a persistent infection after their single 3-week course of antibiotics. A persistent infection or co-infection with a tick-borne illness was a consideration in their previous paper. 
- 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. 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… Read more »
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.
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. 💚
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.
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.