Understanding and Diagnosing Chronic Lyme disease.
The first step in most healing processes is being able to identify what needs to be healed accurately. It seems like a simple enough point, but in reality, getting a diagnosis can be a complex and muddy part of your therapeutic path. In particular, chronic Lyme disease and associated infections can be very challenging.
Fortunately, at InHealthRVA, we specialize in a combined Functional medicine and Lyme-literate practice, so you can feel secure that the whole picture is being considered in creating and supporting your healing journey.
SUM:
Why is chronic Lyme disease such a controversial and tricky diagnosis?
It has to do with a number of factors:
Long-term health dysregulations after a tick-borne infection are usually due to multiple factors and probably the total of infectious microbe exposure (the pathobiome), not just the infection.
Modern testing is far from perfect.
You'll greatly benefit from the guidance of an expert practitioner who specializes in both Functional Medicine and Lyme literacy to guide you through the multiple layers of healing.
I. Chronic illness is most often due to multiple causes and not just one infection.
We seem to be conditioned to think that there is One Thing causing our health condition and, therefore, a One Treatment solution. The truth is it is most often a combination of issues that perpetuate chronic illnesses. Healing requires peeling back the layers of the different causes until your body is unburdened enough to heal.
What are these causes? While science will keep on advancing, we know enough in 2021 to help most people get better. Read on to learn about areas that may need to be investigated and treated to heal chronic Lyme disease.
1. Your health problems are not just due to a tick-borne infection.
Many people who may be dealing with chronic Lyme disease aren't just suffering from a tick infection.
Like we see with COVID-19 infections, people are differently affected by the same infection depending on their underlying inflammation and other complex factors. As a result, some people bounce back to normal after infection, while others end up with severe, even life-threatening infections and/or "long-haulers syndrome."
Chronic Lyme disease is like 'long-haulers' syndrome but for tick-borne infections. And for both COVID-19 and Lyme, pre-existing or concurrent health dysregulations are likely the reason for it.
To heal, we need to not just focus on the one infection, which may or may not be still active, but to identify and treat all areas contributing to your health picture. In his MSIDS model of chronic Lyme disease, Dr. Richard Horowitz points out that if you have "16 nails" in your foot and you pull 10 of them out, you're doing all the right things but still going to have a lot of foot pain. This is often why it is beneficial to work with a trained Functional medicine and Lyme-literate practitioner. It can be confusing to interpret what healing strategies are working and should be continued despite persisting symptoms and what is not working.
To fully resolve CLD (and any health issue), we want to
identify and address all the causes of your poor health.
The list of areas that we currently understand can contribute to creating chronic Lyme disease (besides a previous infection) include:
Multiple infections (including non-tick borne infections and viral infections)
Food intolerances & allergies
Gut permeability (aka "leaky gut")
Gut microbiome dysbiosis (too much of the wrong kinds of bacteria, yeasts, or rarely, parasites)
Hormone dysregulations (adrenal, thyroid & sex hormones)
Nutrient insufficiencies & methylation inefficiencies
Mold or Mycotoxin illness (CIRS: Chronic Inflammatory Response Syndrome)
Diminished detox ability or excess toxins
Chronic or acute stress
Unrestful or insufficient sleep
Poor mitochondrial energy production
Genetics and epigenetics predispositions
2. A 21st understanding of infections: The Pathobiome.
Until the mid-20th century, infections were still a leading cause of death (especially in children under five years old). However, the practice of medicine and human survival was revolutionized when physician and bacteriologist Robert Koch made his "Koch's postulate" in the 1890s.
Medicine had only relatively recently realized that microbes make us sick (science had started talking about this in 1665). Koch's postulate identified that one bacteria could cause one specific disease. This awareness allowed scientists to focus on how to treat that one infection, leading to the development of antibiotics in the mid-1940s (that's right, only since the 1940's! The awareness of the possibility of vaccination inoculation had been around since about 1800). For the first time in human history, we could easily conquer this leading cause of death and suffering.
That's no small deal. But as always, science and research march on, and today we have a deeper understanding of the interface between the microbial world and human health.
While modern medicine still practices based on this notion that human health problems have one cause, we now understand that human health, including our response to and resolution of infection, has much more to do with the pathobiome or the total pathogenic load. COVID-19 is a tragic but perfect demonstration of this.
What is the "pathogenic load"? The total influence of all possibly harmful microbes (such as bacteria and viruses) that could make us sick.
Most of us are exposed to or carry around numerous harmful or even deadly microbes all the time. Every virus you have ever had lives on in your body. We are all walking around and exposed to bacteria and other microbes that could make us sick or kill us all the time. Very few actually do. Why? Because of our immense and incredible immune system, whose job it is to maintain harmony with this vast microbial world (very few of which are genuinely infectious and harmful).
Another tragic but informative example of the power of the immune system is HIV/AIDS. As we all unfortunately know, HIV can be deadly. Not because the virus itself makes us sick, but because it compromises our immune system's ability to defend itself against the routine parade of microbes most of us are exposed to all the time.
"... nearly everyone routinely carries pathogens, microorganisms known to cause illnesses. In healthy individuals, however, pathogens cause no disease; they simply coexist with their host and the rest of the human microbiome, the collection of all microorganisms living in the human body. Researchers must now ...revise[ing] current concepts of how microorganisms cause disease."
But HIV/AIDS isn't the only thing that can compromise the immune system's ability to maintain this balance. The list above, including everything from the gut microbiome and our diet to chronic or severe stress, will also compromise our immune system and make us more susceptible to long-term adverse health changes due to infectious microbes.
II. What about Lyme and co-infection lab testing? Doesn't that tell for sure if an infection is causing our illness?
In short: not really.
First, IgG positive does not indicate an active infection. IgM negative does not rule out that infection.
Second, we may not be able to detect an active infection with current clinical lab testing options.
Many people's (practitioners included) understanding of infectious lab testing and their interpretation is flawed. Read on for a better understanding of how to use and interpret infectious testing.
There are two main types of testing:
DNA testing: We are looking for DNA that is specific to a particular microbe.
This is the "gold standard" of testing. If we find DNA in the sample, that means that that microbe is definitely alive and replicating in your body.
It's harder to find a positive because the DNA of a microbe is not necessarily teaming in your blood (or whatever bodily sample is being tested). The microbe may be living in parts of the body we can not easily get samples from the nervous system or joints, for example. If the DNA of a microbe turns up in a body sample, this is a straight-up infectious disease, and you would likely be severely ill with tell-tale signs of that specific infection.
Antibody tests (IgG, IgM): This testing looks for the immune system's immunoglobulin (Ig) specific response to a particular infection.
IgM is evidence that your immune system was recently infected (the 'first responder' immunoglobulin).
IgM is considered evidence of an active infection.
IgG is evidence that you were exposed to this microbe sometime in the past. This Ig gives you immunity to that organism should it be reencountered. It is the same immunity that vaccines provide you.
IgG is not considered an active infection but evidence of a past active infection for which you now have long-term immunity.
2. Issues with testing interpretation:
It isn't as neat as DNA or no DNA, IgG or IgM positive or negative in the real world. Why?
Viruses. Remember how I said above that we never actually get rid of viruses? Every virus we've ever encountered still has residency in our bodies. Our immune system develops immunity to them (virus-specific IgG's). Viruses could become 'reactivated,' usually because your immune system gets weak due to lifestyle and environmental factors or our overall pathogenic burden.
A high or relatively increasing IgG (compared to past testing) could mean that that virus is replicating and your body's immune system is trying to contain it.
The increasing IgG could also mean that your body is doing this job well, and it is contained! And not causing health issues.
But this may still overburden the immune system, leaving it compromised to deal with other issues.
Viral reactivation may be the result of a compromised immune system and not the original cause. A perfect example of this is Shingles, which is reactivated Chicken Pox (varicella-zoster) virus. It usually happens in those with compromised immune systems, such as the elderly, already sick, or plain worn-out.
So even if you think a viral reactivation is part of your health symptoms, it's best to investigate still and address how you became immuno-compromised.
Conclusion: elevated IgG to a specific virus (such as some of the more commonly tested ones like EBV, CMV, HSV1 and 2) does not mean that infection is causing your health problems. It either is an innocent bystander or maybe part of the overall pathobiome and environmental load weakening you and contributing to making you sick. In current technology, it comes down to clinical diagnosis and trialing treatment.
Microbiologists researching Borrelia species and other tick co-infections tell us that these microbes have a much more complex life cycle in the human body than 20th-century immunology told us. Many of these specific microbes can hide from and evade our immune system while simultaneously co-opting our bodily functions to support their survival and making us sick.
IgG positive to a specific bacteria does not mean that that microbe is making you sick. Remember, IgG positive is evidence of exposure to that organism in the past. So IgG positive to Borrelia burgdorferi, Babesia, Bartonella, Anaplasma/Ehrlichia, etc., and so on, is evidence of past exposure and not a currently active exposure.
IgG or IgM negative to a specific bacteria does not mean that that microbe isn't making you sick. It could have evaded your immune system's detection, and the sample tested might not contain this evidence, or it may be that your immune system is too compromised to mount a detectable response.
III. Chronic Lyme is a clinical diagnosis.
Confused yet? So is the medical community. What it comes down to is that Chronic Lyme disease is:
Due to multiple health dysregulating events, including diet and lifestyle to concurrent infectious load (the pathobiome), stress, toxins, and more.
Almost always, a clinical diagnosis. This diagnosis is based on the total of a person's health history, of known or suspected tick-borne infection exposure, symptoms, and testing (of a range of health variables, not just infections, to identify concurrent or contributing health issues).
IV. What should you do if you suspect your chronic health issues may be related to chronic Lyme disease?
Healing requires a multi-front approach addressing all the areas compromising your immune system and making you sick.
This usually requires or is accelerated by working with a combination of a Functional medicine and Lyme-literate practitioner. This could be the same person or a team of people aware of the other's work and can integrate their protocols and strategies.
You'll be working on many areas of health, often at the same time. This may include lifestyle factors such as sleep and nutrition, mindfulness, stress reduction, healing trauma, and environmental factors such as infections, allergies, mycotoxin illness (or CIRS), hormones, nutrient insufficiencies, methylation, detox, and toxicants.
Functional medicine:
Functional medicine encompasses most of the non-infectious variables you'll need to investigate treat. Unfortunately, there is no standard Functional medicine education as of yet, so you'll want to find someone, or several people, who can investigate and coordinate any treatment necessary related to nutrition and nutrients, the gut microbiome, hormones, mold or mycotoxin issues, cellular health, toxin and/or detox issues, methylation inefficiencies and lifestyle medicine (sleep, stress, exercise, and mindfulness).
Lyme-literate
Suppose your Functional medicine practitioner(s) is not also versed in working with infections. In that case, you'll need a separate Lyme-literate practitioner who can work with you to address any infections and immune-dysregulations resulting from them. In addition, this person needs to be adept at the complexities of infectious-disease lab interpretation, as discussed above.
Will you need antibiotics?
That depends. Unless the infection is recent (in which case a four-week course of doxycycline with lots of probiotics is in order), usually you'll start with laying the groundwork with gut health, detox, nutrition, and lifestyle therapies as a priority. You may be concurrently adding in Lyme treatments, either herbal or pharmaceutical, depending on your health and your personal choices to deal with multiple and possibly challenging treatment areas.
I've found that treating the whole body first allows a person to respond better and with fewer side-effects to Lyme/co-infection treatment and may even allow a person's body to resolve it on their own once any overall body burden is lifted. I refer out when I believe antibiotics are necessary and continue to work with that person to coordinate treatments to address the whole person.
Looking for help?
At InHealthRVA, we practice a combined Functional medicine and Lyme literate practice, working to identify and sequentially work through all areas that could be compromising your health. We are a one-stop practice supporting you with the full gamut of Functional medicine testing and treatments as well as non-antibiotic Lyme therapies.
Wondering if we can help you? Give us a call.
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