Many doctors believe that if they don’t follow a certain set of guidelines for Lyme diagnosis and treatment they could get in trouble with their respective Colleges. Even though there are now a number of Lyme guidelines available for use, the main set of guidelines used for diagnosis and treatment around the world is that of the Infectious Diseases Society of America (IDSA) – https://www.idsociety.org/practice-guideline/lyme-disease/#Notes. What should be of interest to all is the Disclaimer under the “Notes” section in this set of guidelines. In brief, it notes that following the guidelines is voluntary; that they do not mandate any specific course of medical care; and that they are not meant to supplant physician judgement.
As several doctors in Canada have either lost their license; been forced to retire; or been forced to stop treating Lyme patients over the last few years, it does seem feasible that doctors should be concerned. However, the Disclaimer on the IDSA guidelines would suggest that physicians are able to review all guidelines that are available and make an informed decision based on their patient’s symptoms.
In Nova Scotia, the present guidelines for Lyme and tick-borne diseases is called the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia” of – https://novascotia.ca/dhw/cdpc/documents/statement_for_managing_ld.pdf. The document was prepared by the Nova Scotia Infectious Diseases Expert Group (IDEG). In this document, the IDEG recommends that “Lyme disease should be treated in accordance with the IDSA/AAN/ACR1 and American Academy of Pediatrics14 guidelines”. The Nova Scotia guidelines do not include a link to the full IDSA guidelines, nor do they include the Disclaimer noted in the IDSA guidelines.
When the Nova Scotia College of Physicians and Surgeons was asked a few years ago whether doctors are being investigated if treating Lyme patients, a representative advised that the College does not investigate doctors, unless there is a complaint. If this is, in fact, true, then doctors have some leeway as to how they diagnose and treat Lyme and tick-borne diseases. Certainly more than they think they do anyway.
The following are some of the other Lyme guidelines now available:
- The following document was prepared for the Canadian federal government – https://cep.health/clinical-products/early-lyme-disease/. It is for “Early” Lyme only. It’s not meant for Early or Late Disseminated Lyme. Hopefully, another set will be available soon for later stages. It is interesting to note the Clinical Working Group Team members. The Team consisted of several members from Nova Scotia; as well as a Nurse Practitioner; a Lyme advocate with lived experience; and a doctor that treats many patients with Lyme and tick-borne diseases.
- The International Lyme and Associated Diseases Society (ILADS) guidelines – https://www.ilads.org/patient-care/ilads-treatment-guidelines/.
- The National Institute for Health and Care Excellence (NICE) guidelines – https://www.nice.org.uk/guidance/ng95. Note the “Your Responsibility” section on the front page.
There may be more; however, these provide a good starting point to attain information.
There have been doctors in Canada, and beyond, that have been successful in being able to diagnose and treat Lyme and tick-borne diseases with a variety of treatment protocols, including longer-term antibiotics – if required. Between the IDSA Disclaimer and their thorough record keeping, they were able to adequately respond to any concerns expressed.
Doctors have the ability to deal with their patients on a case by case basis. ALL patients are different, especially with respect to Lyme and tick-borne diseases. Symptoms can vary from person to person and from day to day. Symptoms can vary due to where on the body the person was bitten; what the tick was carrying; what underlying conditions the patient was already dealing with; and how much time has passed since the bite. I can’t understand why there are some that feel that the same treatment will work for everyone.
In case someone in health care actually reads this, I’m going to add a couple of facts and some information that should help you to diagnose Lyme and tick-borne diseases in your patient, even if they don’t recall a bite; didn’t have an erythema migrans rash; and/or didn’t test positive on the testing presently available.
First of all, the erythema migrans rash, which is a telltale sign of Lyme, is often overlooked or misdiagnosed. Although the bull’s-eye version of this rash is the better known, it is only seen in a small percentage of cases. Other types of rashes are more common. As well, about 20% will not get a rash and of the 80% (or so) that do get a rash, many will not see it due to its location on their body. I have heard of people being initially diagnosed with cellulitis, ringworm, and more, and eventually being diagnosed with Lyme. It is also important to note that it can be very hard to see a rash on those with darker skin.
There are three stages to Lyme – Early localized Lyme (or Acute), Early Disseminated and Late Disseminated. Symptoms can overlap and some people may only present with later stage symptoms. I am aware of at least one person that only presented with Lyme carditis. If left untreated, or under-treated, it may progress from mild, or no symptoms, to serious, long-term disabilities. Early diagnosis and sufficient treatment is key.
Because of the small size of ticks and the fact that they secrete a number of substances to keep the bite from becoming itchy, etc., many people never see the tick that bit them, or are even aware that they were bitten. Unfortunately some doctors disregard Lyme as a potential cause of their patient’s symptoms based on the fact that they were not aware of a tick bite.
I frequently hear that people have been told that their Lyme test came back negative so therefore they do not have Lyme. Unfortunately, there isn’t a test at the moment that can state with 100% certainty that you do, or do not, have Lyme. The sensitivity/specificity rates of the tests vary through the various stages of Lyme and for a number of reasons. Testing presently used in Canada, and beyond, can have false positives AND false negatives. Just because a Lyme test is negative, it does not mean you do not have Lyme and/or another tick-borne disease. For instance, Borrelia miyamotoi, which can result in a Lyme-like illness, is not picked up with the present testing utilized in Nova Scotia, but has been found in some ticks.
Because of the many overlapping symptoms attributable to Lyme and tick-borne diseases, and the concern of a possible misdiagnosis, several questionnaires were developed to help doctors determine if Lyme may be the cause of their patient’s symptoms. One of the more recently developed questionnaires was prepared by a number of doctors in the US. It is called the General Symptom Questionnaire-30 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/. All doctors should take the time to review the information and consider using it for those presenting with multi-systemic symptoms, that come and go, and change day by day.
It’s well past time that doctors start to listen to their patients and spend enough time with them to more quickly diagnose and treat Lyme and tick-borne diseases. Although there are many issues hindering that ability, all doctors need to speak up, and out, to ensure the best quality of care for their patients.