11 responses to “Symptoms attributed to Chronic Lyme Disease”

  1. Wow thanks for this most useful review!!! Here in the Kootenays I sometimes feel at the epicentre of chronic Lyme sufferers…….especially as we have a physician offering “more sensitive” testing at non validated US labs with frequent positive results. I have seen 13 year olds given a year of rifampin for diagnoses of concurrent Lyme, Babesiosis and Ehrlichosis. It is good to have more resources to offer(often desperate) patients, most of whom probably fit CSS criteria. Are there any trials of mindfulness to assist in calming that overly sensitized nervous system?

  2. In Kelowna as soon as the weather warms and the ticks start coming in to the ED usually attached to a young child I have to relook at whether recommendations have changed. I continually am reassured that the presence of Lyme disease is low but still potentially present. Instead of going on the defence I have started to encouraged parents to send the tick in with a phsyician’s help.
    How to submit a tick for testing

    If your doctor wants to have the tick tested:
    Save the tick in a container with a tight fitting top.
    Dampen a small cotton ball and put it into the tick container to keep the tick alive. (A live tick is necessary for culturing the spirochete which causes Lyme disease.)
    Label the container with date shipped, name and address of person bitten or what type of animal the tick was from, what part of the body was bitten, and what part of the province the tick probably came from. Also include the name and address of your physician.
    Testing is only available for BC residents.
    Ticks must be submitted as soon as possible by a physician or public health professional to:
    BC Public Health Microbiology and Reference Laboratory
    655 West 12th Ave.
    Vancouver V5Z 4R4 BC Canada
    Atleast when it comes back as a non carrying type or negative it provides some piece of mind. Educating what to watch for is also useful, at least from a medicolegal point. A review on testing is available in BCMJ Vol 57, No 9 , Nov 2015

  3. Do you prescribe longer term antibiotics when the patient requests them, even after the explanation of their non-utility is given? If so, what rationale do you provide; if not, how do the patients respond?

  4. Thank you for this. What an excellent review and update.

  5. Another excellent article by DR Arsenault. Biomechanical medicine often lacks the imagination to reconceptualise different kinds of illness. Thank you for the resources and encouragement to take the time to educate this often exploited and harmed group of patients.Info on low prevalence of infected ticks will help my educational endeavors.

    Rick Hudson MD CCFP

  6. Thoughtful straightforward article which helps sort out true Lyme from imagined Lyme disease and points on how to manage both patient populations. Thank you Carol Pfefferkorn, M.D.

  7. Although not directly my area of practice, which is Child and Adolescent Psychiatry, the topic of Lyme disease being the root of a presentation such as OCD or other non-specific symptoms has come up in my practice. I appreciate the note on the high rates of false positives given by certain labs in the US. I also appreciate the discussion on the complexity of these issues and how we don’t always have answers for our patients but we might have some solutions.

  8. Fantastic re-framing and great advice about not getting into a debate about causation. There will be a subset of patients who still want eternal ceftriaxone who will balk, but even then hopefully a seed can be planted for the future.

  9. Response to questions:

    There is moderated evidence that mindfulness based practices help “calm” the adrenergic symptoms associated with Central Sensitivity Syndromes. We use these at the Complex Chronic Disease Program, and I use them in my practice.

    The fact that there is no evidence of persistent infections in patients with symptoms attributed to “Chronic Lyme Disease,” does not mean that we do not need to be vigilant for Lyme disease itself. Tick surveillance is very important, and I strongly agree with the recommendations made by Dr. Gord McInnes above. Early treatment of acute Lyme disease is important in preventing late Lyme disease (e.g., arthritis).

    I do not prescribe antibiotics (or antifungals) for symptoms attributed to “chronic Lyme disease”. In patients who are positive for Lyme by BCCDC testing and have not been treated in the past, a short- course of antibiotics are warranted. In my discussions with patients, I sense how committed they are to the concept of CLD and how open they are to alternative explanations (e.g., CSS, ME/CFS, FM). If I sense any resistance, I stop focusing on an alternative explanation and talk about competing theories for the symptoms – CLD vs CSS. I tell patients that while I cannot prescribe antibiotics given the lack of evidence regarding benefit and the well know significant morbidity, I am happy to work with them on other approaches to their symptoms. I provide them with a copy of an article that looks at both the persistent infection vs triggering of CSS:
    Despite this, it is not uncommon for me to encounter patients unwilling to consider anything else but the concept of CLD.

    Thank you for the kind responses.

  10. This ever-timely area is so eruditely presented here, & is much appreciated. Most patients have had many courses of antibiotics & various other medications, & still have persistent symptoms. The VLsE1 test would seem our greatest asset in separating fact from perceived CLD with symptoms, & this non-confrontational approach to the suffering patient will surely bring comfort as well as safer treatment programs.

Leave a Reply