• Annie V. Henry

The Importance of Lyme Literate Doctors in Battling Lyme Disease: All About Lyme Literate Physicians

The term “Lyme literate” doctor is thrown around a lot among the Lyme community. Find a Lyme literate doctor is the first piece of advice most chronic Lyme patients would give to someone who suspects they have Lyme disease or another tick-borne illness. Yet a quick internet search may lead to confusion—at first glance, there is no clear path to finding a Lyme Literate doctor. So today I’ll attempt to clear up the confusion and explain why—as someone with chronic Lyme disease—I believe Lyme literate physicians are game-changers when it comes to diagnosing and treating tick-borne illnesses.

The importance of Lyme literate doctors and Lyme literate physicians and LLND

Let me start by clarifying that there is no “official” certification to be deemed a Lyme-literate doctor. By nature, this lack of definition and certification can make it difficult for patients to find a Lyme literate doctor and for doctors to be hesitant about advertising their Lyme literate status.

Now, before you grow skeptical about the legitimacy of the concept of Lyme literacy, hear me out—I’m going to dive into the factors that make Lyme literate doctors so important to patients struggling with undiagnosed tick-borne illnesses and chronic Lyme disease. There is a portion of the western medical community that would call Lyme literate doctors unqualified or “quacks”. Yet patients and doctors who have witnessed the serious flaws related to the diagnosis and treatment of tick-borne diseases—flaws that are so deeply rooted in our medical system—know just how critical understanding the many layers of Lyme disease is to be able to effectively identify, diagnose, and treat such a notoriously difficult disease.

Did I lose ya? I’m sure that tangent turned off a reader or two. However, if you are suffering from what you suspect to be Lyme disease or another tick-borne illness, I urge you to read on. You may have to endure another mini rant, but what I will discuss over these next few pages may persuade you to seek out a Lyme literate physician. Who knows, connecting with a Lyme literate doctor could very well change the trajectory of your health journey. I can attest to that—my first appointment with a Lyme literate doctor changed my life and set me on the road to getting my health back.

What Makes a Doctor Lyme Literate?

Before I move forward, let me take a step back and clarify what a Lyme literate doctor is. In short, a Lyme literate doctor has extensive knowledge of and experience with tick-borne diseases—from understanding the intricacies of Lyme disease and co-infections, to recognizing the misconceptions and misinformation that shrouds tick-borne illnesses, to having experience effectively diagnosing and treating Lyme disease.

A Lyme literate doctor is not exclusively an infectious disease specialist and, unfortunately, not all infectious disease doctors are Lyme literate. From traditional doctors of medicine (M.D.s), to naturopathic doctors (N.D.s), to medical specialists—various types of certified physicians can be Lyme literate.

If you’re already on board with the idea of seeing a Lyme literate doctor, find some resources on how to find a Lyme literate doctor here. There you can find links to resources to guide you in your search for a Lyme literate physician.

Why are Lyme Literate Doctors so Important? The Issue of Effective Diagnosis and Treatment of Lyme Disease

Lyme literate doctors are game-changers when it comes to tick-borne illnesses because they are often aware of the many issues and misconceptions related to diagnosing and treating Lyme disease. Let me try to summarize what I believe to be some of the main issues related to how the general medical system approaches Lyme disease and other tick-borne diseases.

The Pitfalls of the Lyme Disease Diagnosis Process

There is a plethora of issues when it comes to accurately diagnosing a patient with Lyme disease. Firstly, Lyme disease testing is not always accurate. If there is an overreliance on test results in the diagnosis process, patients may be told they “don’t have Lyme disease”. If their test result was a false negative—which unfortunately is not uncommon—this puts them in a very difficult situation. They will likely travel down a path of remaining misdiagnosed or undiagnosed as their health continues to spiral out of control—I say this from personal experience.

Try to put yourself in the shoes of an undiagnosed patient with bizarre and progressing symptoms—if you are told by a certified medical professional that you don’t have Lyme disease, you are likely going to overlook or ignore any further information about Lyme. You may dismiss the potential of Lyme disease altogether and continue to be bounced around from doctor to doctor in hopes to receive an accurate diagnosis or effective treatment. Worse yet, you may spend a lot of time and financial resources trying to find answers, all to no avail. Not to mention you’ll likely experience a decreased quality of life. By no means am I arguing here that every doctor who tells a patient they “don’t have Lyme disease” is wrong, but an over-reliance on test results in the diagnosis process can be detrimental to a patient’s health journey.

This leads to a qualm I have with the overarching mentality surrounding the Lyme disease diagnosis process. Testing is indeed important. Without a doubt blood testing—among other medical testing techniques—is a useful diagnostic tool. Yet, like any other man-made tool for measurement and evaluation, blood testing has an inevitable margin of error. Failing to acknowledge this margin of error—in this case the prevalence of false-negative Lyme test results—limits a physician’s ability to reach an accurate and comprehensive diagnosis.

I’ll state my opinion in saying that all too often doctors place blood testing on a pedestal and can be too reliant on test results in the diagnosis process. Especially when it comes to Lyme disease, more emphasis needs to be placed on other tools of clinical diagnosis—such as symptom analysis and medical history. In the diagnosis process, blood testing should be used in tangent with other forms of diagnostics and clinical evaluation.

This is based on my personal experience, but it is something I have a feeling may resonate with many other Lyme patients. I’ll be the first to acknowledge that I butchered that argument, so to help me better articulate the point I’m trying to make, I want to share an excerpt from the International Lyme and Associated Diseases Society’s article Controversies & Challenges in Treating Lyme and Other Tick-borne Diseases:

“Lyme disease is a clinical diagnosis based on the history and physical findings, and supported by appropriate laboratory tests when they are indicated. These elements must be considered in the context of the individual patient’s full story…No single element of the diagnostic process outweighs the full and complete evaluation. The strengths and limitations of laboratory testing must be understood by the clinician in order to use testing modalities effectively and avoid some of the pitfalls of diagnosis that can result from over-reliance on laboratory testing to rule in or rule out an illness”.

On top of the issue of testing, the topic of co-infections brings up another key layer of the Lyme disease diagnosis process. Co-infections—such as Babesia, Bartonella, Rocky Mountain spotted fever, and Anaplasmosis (just to name a few)—are other tick-borne bacterial infections that can accompany Lyme disease or stand alone.

Co-infections usually cause additional unique symptoms and can often require types of antibiotics and treatment that are different than those used to treat Lyme disease. Even if a patient receives an accurate Lyme disease diagnosis, the presence of undiagnosed co-infections can prolong their illness and present roadblocks during treatment. Lack of awareness and sufficient testing for co-infections adds another complex challenge to the process of identifying tick-borne infections.

Some Controversies Related to Lyme Disease Treatment

In addition to problems related to diagnosis, there is much misunderstanding and controversy about what proper Lyme disease treatment entails. For example, certain official standards recommend only a two to four-week round of antibiotics to treat Lyme disease. In my opinion, this is a simplified and generalized standard. Some Lyme cases—especially chronic cases—require a much longer and more holistic approach to treatment. For many Lyme patients, two to four weeks won’t cut it. Some doctors recognize that treatment for some patients may need to go beyond this initial round of antibiotics. However, lack of awareness or dogmatism can lead some doctors to dismiss a Lyme patient after this initial round of antibiotics is completed, even if their symptoms persist.

On top of this, there is some narrow mindedness about alternative Lyme disease treatment options, such as herbal medicine or ozone therapy. Although pharmaceutical antibiotics can be very effective, they do have their limitations. They are not the only option for Lyme disease treatment, and if anything, should be used in tangent with other therapies and lifestyle changes. I say this as a walking example of the potential that alternative and holistic Lyme disease treatments hold. My treatment experience has involved treatments ranging from conventional antibiotics to very alternative therapies—this holistic combination has been a very effective approach to treating my three tick-borne illnesses. But I digress—more on that another day.

Another concept inherent to Lyme disease treatment that some doctors may be unaware of is herxing. If a herx reaction is misidentified as an allergic reaction, a patient may be taken off of antibiotics that are, in reality, doing their job. Not to say that all adverse reactions to antibiotics are herxes, but being knowledgeable about the ins and outs of herxing is key to providing a patient with effective guidance and treatment.

Side note: I fully realize that in this (long) summary I generalized some very nuanced and complex topics—topics that deserve entire articles of their own. I intend to address these issues in future articles. For now, to help further clarify the controversies and complexities shrouding Lyme disease, I suggest you read this article posted by the International Lyme and Associated Diseases Society. It dives into the controversies and challenges related to treating tick-borne diseases.

Addressing the Issues Surrounding Lyme Disease—The Role of Lyme Literate Doctors

The combination of issues related to Lyme disease diagnosis and treatment can present obstacles for patients—whether they are living with undiagnosed or properly diagnosed tick-borne infections. As someone who has experienced these obstacles first-hand, I can attest to how detrimental they can be on a patient’s health and quality of life. I was one of the many people whose disease was initially missed due to inaccurate testing and a lack of understanding and awareness of the issues related to Lyme disease. It wasn’t until I was seen by a Lyme literate doctor that the three tick-borne infections that were wreaking havoc on my body were identified. Because Lyme literate doctors are—in theory—aware of the misconceptions and controversies discussed above, they can be more able to effectively diagnose and treat tick-borne illnesses.

A Good Lyme Literate Doctor Will Enhance the Patient Experience

Like in any area of medicine, there will inevitably be “bad” or ineffective Lyme Literate doctors. Just because a physician is “Lyme literate” does not automatically make them a good Lyme doctor—there are many other factors outside of Lyme literacy that can make or break your experience with a Lyme disease specialist. Yet the “good” doctors who are Lyme literate can make a world of difference when it comes to an individual patient’s experience with tick-borne diseases.

Not only can Lyme literate physicians pay a key role in the diagnosis and treatment of tick-borne illnesses, a good Lyme literate doctor—in my opinion—will have a better understanding of the Lyme patient experience. Because of their knowledge and extensive experience with tick-borne infections, they may be more open-minded, considerate, and sensitive to the many experiences and challenges involved in living with Lyme disease and tick-borne illnesses.

This is a subjective opinion, but it is one I believe important to add to this piece. The experience of living with and managing Lyme disease—especially chronic Lyme disease—is so unique. Unless you’ve personally experienced it, it is difficult to appreciate the challenges and demands it entails. Not to say that a non-Lyme literate doctor can’t provide a positive patient experience, but I believe that most Lyme literate doctors have the experience and exposure needed to be attuned to the specific care Lyme disease patients often require.

Resources to Find a Lyme Literate Doctor

Now, this wouldn’t be a very helpful article if I didn’t include resources on how to find a Lyme literate doctor, now would it? Like I said before, it can be tricky to pin down Lyme specialists, so here are a few resources to start your search for a Lyme literate physician.

International Lyme and Associated Diseases Society: Provider Search

LymeDisease.org: Lyme Disease Physician Referral

Global Lyme Alliance: Find a Lyme Literate Health Care Provider

It goes without saying that these resources are a starting point. If I learned anything from my attempts to find a good doctor, it is the importance of doing your due diligence.

Before committing financial resources, do what you can to conduct a “background check” on the prospective Lyme specialist. Review their website—how do they talk about Lyme disease, health, and patient experience? Get a sense of their mentality and approach to medicine—does it align with what you feel you need out of a doctor? What experience do they have with tick-borne illnesses? What methods of treatment do they use? Most importantly, research patient reviews and look out for any red flags. If possible, sign up for an introductory consultation to see if that doctor may be a good match.

Moving Forward

There are two main points I’d like to end this (very long) article on. Firstly, let me just say that Lyme disease would be far less severe of an issue if there were more Lyme literate doctors in every area of medicine.

Because Lyme disease holds the potential to affect any system of the body, Lyme literacy is something that should not only be increased among general practitioners, but also among professionals who specialize in specific areas of medicine. Undiagnosed Lyme patients are often referred to various specialists throughout the diagnosis process—from ENTs, to neurologists, to rheumatologists. Increasing Lyme literacy among medical specialists could increase a patient’s chance of receiving an accurate and timely diagnosis, which in turn could possibly save them many months or years of being undiagnosed or misdiagnosed.

Lastly, my advice to anyone struggling with an undiagnosed illness resembling Lyme disease—or a Lyme patient who feels they are not receiving effective medical care—is to connect with a Lyme literate doctor. Look at me bringing this article full circle. It may be a cliché piece of advice in the Lyme disease community, but oh can it make a world of difference!