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. [1]

 

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).

Post-Treatment Lyme Disease Syndrome patients report sleep disturbances.

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. [2]

References:

  1. 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.
  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.


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Dr. Daniel CameronGail SmithLynn Shepler, MD JDRebecca WilliamsJacque VanBuren Recent comment authors
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Gail Smith
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Gail Smith

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?

Lynn Shepler, MD JD
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Lynn Shepler, MD JD

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!

Rebecca Williams
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Rebecca Williams

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… Read more »

Jacque VanBuren
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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… Read more »

Cat
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Cat

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. 💚

Dodie
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Dodie

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.

Rebecca Williams
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Rebecca Williams

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,… Read more »

Cherwyn Ambuter
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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… Read more »