Lyme for Beginners: or How Do I Know if I Have “Lyme?” 

When I started my practice in 1999, I didn’t want to focus on Lyme and other chronic “infections.” But alas, here in Connecticut a doctor has to know a thing or two in order to determine the likelihood of an acute infection or more commonly, a post-infectious syndrome. 

Here are some basic facts about tick-borne disease to help you better understand the difficulty many people face in terms of proper evaluation: 

1. You can’t believe the tests. Blood tests for Lyme and its common co-infections are notoriously inaccurate. There’s a few reasons for this and it’s my opinion that one of the most significant reasons has to do with whether your immune system is able to react properly to many pathogens. Sometimes I use one of the labs that specialize in infectious disease diagnosis. Over the years, I have seen a number of co-infections test positive from Medical Diagnostic Labs or Igenix, when other lab results were not showing an issue. 

2. You can’t believe the tests. Didn’t I just say that? I’m saying it again because sometimes you’ll have positive results for years after the infection has cleared but you still are dealing with the “leftover effects” on various tissues of the body. I sometimes think of these leftover effects as patterns, or loops, that the body’s immune system and nervous system is struggling to shift away from. The ability to regain good health must incorporate therapies that address these two systems. This is why antibiotics are not the only way, nor the best way, to deal with Lyme and co-infections in the long-term. In the short-term, or in sub-acute disease, they can be very helpful!

3. Dr. Richard Horowitz’s MSIDS questionnaire is also a helpful tool and can be found here. This questionnaire can help you get an idea of the likelihood you’re dealing with a chronic infection, even if you’ve had negative test results.

4. Your main symptoms may not be musculoskeletal pain. Although a good indicator of Lyme disease is migrating joint pains, a lot of folks have mainly neurological symptoms like brain fog, confusion, poor memory and sudden mood swings. There’s a real thing called “Lyme rages” and anxiety is very common as well. Other people have a lot of cardiac symptoms with rapid heart rate, flutters and skipped beats. Many people have debilitating headaches and some have low-grade fever and just a sense of feeling unwell and almost everyone has fatigue and/or weakness. Most commonly, I hear people complain of some combination of these issues.

5. Your lymphatic system is certainly involved with any lingering syndrome after infection. The lymphatic system is responsible for triggering a proper immune reaction in response to exposure to all bacteria, not just the ones that are carried by ticks, insects and other animals–like lizards! Crazy! It is the lymphatic system that must spring into action when the tissues are exposed to a pathogen, be it bacterial, viral, mold toxins, etc. The lymph nodes (little sponges along the delicate lymphatic channels) must create antibodies to help the body rid itself of infection. Furthermore, the lymphatic system must act as the “waste management system” as well, eliminating the toxins left behind once the acute infection has been eradicated. When people are sedentary, have scars or an overload of toxins already present in the body, the lymph system may be overtaxed and not able to do its job as efficiently as it should. This is why it’s a two-way street–having sluggish lymph can make you more susceptible to developing chronic symptoms of infection and the lymph can also be affected when you’ve been dealing with a long-term infection for months, years or even decades! Addressing lymphatic health is important regardless of your current health status, but anyone dealing with lingering symptoms of infection must consider support for this critical system in the body.

6. Many people will see rheumatologists, neurologists, cardiologists, multiple internists, infectious disease docs and still no one can put it all together and address the real underlying issues with chronic infections–inflammation, immune system confusion (auto-immune issues) immune system depletion and the need for regular bodywork to keep the connective tissue “untwisted” and the lymphatic system able to do its job! It takes a team.

7. Finding a doctor that is literate in all the various problems chronic infections can cause (inflammation, brain issues, gut disturbances, cardiac issues) is hard enough but finding a Lyme-literate MD (LLMD) that actually knows how to help tissues heal and the body recover is even harder. Then the hurdle of getting an appointment with them and having thousands of extra dollars laying around to spend on your health! It’s a huge problem. I suggest doing the research and finding a Lyme-literate naturopathic doctor in your area. It’s becoming such an epidemic that we (NDs) are doing more and more of this work because we are the doctors that often trust what our patients are telling us about the way their bodies feel.

8. Get support–you’re not alone! One caveat, some of the support groups can be pretty overwhelming so by “support” I mean, find your care team and perhaps one or two sympathetic friends or family. Not everyone understands this complex chronic illness.