Why Are Doctors Concerned About Treating Lyme?

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.

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.

Support Groups for Lyme – Are They Needed?

Several years ago a person attended one of my Lyme Support Group meetings and went back to her doctor with questions. Their doctor recommended that they not attend Lyme Support Group meetings anymore. They came back one more time to tell me that. I found that very concerning in that I can’t imagine any health care practitioner telling someone not to go to any other type of Support Group. Why Lyme?

I have been running the NS Lyme Support Group for many years now and I like to think it’s helpful for those that are struggling. We don’t push treatment protocols and we don’t tell everyone that they have Lyme and/or tick-borne diseases.

We listen and don’t judge. We let people vent. We provide an opportunity for those that may not have any other support system to feel like they are not alone, as dealing with Lyme and tick-borne diseases can be VERY lonely.

At our last meeting there was a “newbie” that was recently diagnosed with Lyme after 3-5 years of struggling with steadily increasing symptoms. The diagnosis was via Nova Scotia health, after the “newbie” requested a test. They had a lot of questions about the lack of awareness and knowledge in this province. They also made a lot of good points regarding what is being done poorly here, in the rest of Canada, and beyond.

I thought I would provide a synopsis of some of our discussion to give people an idea of what goes on in a Lyme Support Group and to get people thinking about what needs to be done to help those that may be dealing with tick-borne diseases or even other multi-systemic illnesses. I would also love to hear your thoughts on whether a Lyme Support Group is needed and, if so, why you think doctors are so against them.

One of the issues that arose was regarding how we can help others. It was noted that many people that may be dealing with a later stage of Lyme may not be working so funds are limited. They may also not be able to drive, especially at night. Because of memory issues, for some, they don’t remember all that doctors tell them and they don’t always remember to take notes or record the session (which some doctors don’t allow). The idea of a mobile support system was raised several years ago but never moved forward due to a number of reasons, not least of which is that many people were too sick to volunteer to help others. Getting patients to their appointments; providing them with healthy, prepared food; visiting; etc., is needed.

With many other illnesses, people not dealing with it will help raise funds; they will provide food; they will offer drives; they will jump in with both feet and help wherever they can. With Lyme, many that are not dealing with it personally cannot understand how it can impact someone. They have heard, over and over again, that it is basically a rash and flu-like symptoms. That it’s rare, hard to get, and easy to treat. They have heard that once treatment has been received, it’s eradicated. There is very little information readily available on how untreated and under-treated Lyme can result in severely debilitating symptoms, or even death in some cases. Lyme carditis is no longer as rare as it once one. Cases of Neurologic Lyme are also increasing. Even the fact that there is a fairly large percentage of people that continue to experience symptoms after treatment is unknown by many. I guess it’s fortunate that “Post Treatment Lyme Disease Syndrome”, or whatever you want to call it, is now receiving some press due to “Long Haul COVID” which has some similar symptoms. This may result in some help for Lyme patients.

Unfortunately, even those close to people that may be dealing with Lyme and/or tick-borne diseases sometime tend to back away as they don’t understand what’s happening. Those suffering may lose their friends and even their family. They can be left entirely alone and dealing with an illness that requires many layers to eradicate, especially if they have been dealing with it for awhile.

All this beg the questions – How do we get those not already personally dealing with the issue to help those that are? How do we get others to understand the possible ramifications of something as mundane as a tick bite? How do we elevate the discussion? How do we get people to take this seriously and BELIEVE what their loved ones are telling them? How do we get doctors interested and concerned enough to better educate themselves and listen to their patients?

The “newbie” noted that they hadn’t given any thought to Lyme and tick-borne diseases and that it was all new to them. They noted that the only information available appears to be on social media and the internet and that you need to already be aware of what you are looking for to go look for information. There was nothing to suggest “Could it be?”. When this was raised, I remembered sitting in the Infectious Diseases office a few years ago waiting for my appointment with an ID doctor. There were signs in the sitting room regarding Sexually Transmitted Diseases, but that was it. There was nothing about Lyme and tick-borne diseases. There was no sign saying “Could It Be?” These are needed in all walk-in clinics, ER’s, doctor’s offices, and anywhere else people may go looking for help. They would not only help those dealing with a multi-systemic illness that could possibly be caused by a tick bite, but would also remind medical professionals to consider tick-borne diseases when presented with patients that don’t fit a specific diagnosis. They could be dealing with early or late disseminated Lyme and/or other tick-borne diseases.

The “newbie” also noted that their doctor is a pill pusher, which unfortunately seems like a fairly common problem here in Nova Scotia, and no doubt elsewhere. Rather than trying to get to the root cause of an issue, doctors tend to push symptom relief in the form of pain killers, etc. I’m aware of one new doctor to the province that took on a retiring doctor’s caseload. The new doctor had to wean most of their patient’s off of pain medications. This discussion brought up the problem with Canada’s health care system. In many places doctors are paid per patient and have a limited amount of time to spend with their patients if they want to pay their overhead, and give themselves a wage. With multi-systemic illnesses, you need to be able to spend a considerable amount of time with a patient to discuss all that is going on. A quick, or accurate, diagnosis, cannot happen over multiple appointments, over a long period of time.

During the meeting it was raised, once again, that Lyme is supposed to be a clinical diagnosis. We do not yet have any testing that will definitely tell you whether you have Lyme, or don’t. There are several good questionnaires now available to help with a diagnosis. One of them is the General Symptom Questionnaire-30, which was prepared by doctors from a number of research facilities in the United States – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full. It was also noted that those with early or late disseminated Lyme generally have fluctuating symptoms, with every day being different than the last. If a knowledgeable doctor could take the time to go over all of the symptoms and how they are presenting, a quick and accurate diagnosis could be made. As this is not the case at the present time, a dedicated clinic, with doctors fully versed in all stages of Lyme and the various tick-borne diseases, is sorely needed. The sooner the better.

Also raised during the meeting was the issue of doctors, with only general knowledge of Lyme, who prescribe antibiotics to those that have been dealing with the issue for weeks, months, or even years, yet don’t offer any other type of help. Of significant importance is the possibility of a Jarisch-Herxheimer response to the antibiotic which can severely impact their patient in a number of ways. Here are two articles worth reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667941/ and https://www.cmaj.ca/content/194/27/E939. The “newbie” noted that they became quite ill upon starting the antibiotic and located information on a “Herxheimer” reaction on the internet but their doctor had never heard of it. Providing antibiotics to someone that had dealt with the issue for a considerable period of time can result in significant issues. Yet another reason for a dedicated clinic(s), populated with health care professionals that are FULLY educated on all aspects of Lyme and tick-borne diseases.

Every meeting is like this. It jumps around and touches on many different issues. We chat about what people are doing that is helping them. We chat about different areas where help can be found, including Maple, the Holistic Health Centre, and Signature Health, which were all mentioned during our last meeting. We chat about ways people can help boost their immune system by improving their sleep quality/quantity; reducing stress; getting a little exercise; eating better; etc.

We also chat about how every single person is different when it comes to early and late disseminated Lyme. This is due to so many factors, such as: how long ago they were bitten; where the bite occurred on their body; whether more than one thing was transmitted; what other health issues they were already experiencing; and so much more. Since tick-borne diseases can affect everyone differently, doctors shouldn’t expect one treatment to help them all; but, for the most part, they do.

We have also been fortunate to have had an alternative/complementary health care practitioner sit in on our meetings on occasion. They listen to our stories and comment when, and if, appropriate. They also provide some much needed advice on occasion. This has been very helpful for many.

If you think you might be dealing with tick-borne diseases, or you are a support person for someone who does, feel free to reach out and attend one of our monthly NS Lyme Support Group meetings. We have them on the second Tuesday of every month at noon and have been holding them via Zoom since the start of COVID. At some point we will get back to in person meetings in the Bedford area, but will continue on with Zoom as well as people from throughout the province, and beyond, have been able to attend.

I think you can tell from the above that I think Lyme Support Groups are needed, but do you? Would love some feedback.