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A Different Narrative

Tales from those in-the-know about Lyme, mold and other chronic illness.

The Many Nuances of Chronic Lyme Disease (Part 2)

March 13, 2022
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In *part one* of this blog series we reviewed the commonly understood progression of Lyme disease and the expected route of healing. Unfortunately, not every patient responds to their initial Lyme treatment and they are often left dealing with a myriad of health issues which many refer to as chronic Lyme disease. There are a few things to know about Lyme disease that help us consider the complexities of chronic Lyme disease.

The Nature of the Bacterium

As mentioned above: Borrelia burgdorferi (the bacterium responsible for Lyme infection) is a relative to the spirochete bacterium that causes syphilis. What we know about the nature of these bacteria is that they can exist in several forms such as spirochete, L-form, and spore form. This is important because the infection will only be responsive to certain treatments when it is in certain forms, making eradication of this infection multi-layered and time intensive.

The Sources of the Bacterium

Research is still ongoing about the vectors that can transmit Lyme: We now know that both Eastern black-legged ticks and Western black-legged ticks can transmit B. burgdorferi — which means both coasts of the US are areas of risk despite conventional training that still informs doctors to primarily have concern for patients who have been in regions endemic with the Eastern black-legged tick (primarily the Northeastern region of the U.S.). Interestingly, B. burgdorferi has also been isolated in mosquitos, but risk of transmission is still unknown. With changes in our climate, more and more regions of the U.S. and the world are becoming hospitable to the black-legged tick — and with the expansion of their habitat, the areas where Lyme disease can be contracted are also increasing.

The Symptoms of Untreated Chronic Lyme

What becomes most confounding to the patient and the doctor is that the symptoms of chronic Lyme disease can be multitudinous and can affect many body systems. Although there are some more common symptoms to watch for such as fatigue, brain fog, neuropathy, arthritis, muscle and joint pain, neurological problems, and heart involvement — the presentation of chronic Lyme will be unique and somewhat dynamic for every patient. This is mostly due to the next complicating factor in the discussion of chronic Lyme Disease: co-infections.

The Coinfections of Lyme Disease

Ticks usually transmit more than just B. burgdorferi. They could simultaneously transmit Bartonella, Rickettsia, Ehrlichia, Babesia, and the more recently discovered bacterium Borrelia miyamotoi. Simply put, you can have one tick bite, and wind up with several different infections. Therefore each patient with Lyme disease presents differently based upon their co-infections.

So Why Not Just Test for It?

One of the difficulties in diagnosing a Lyme infection by blood test is due to the nature of the bacterium. Shortly after infection, spirochetes of B. burgdorferi set up sanctuaries throughout the body (in the brain, spinal cord, connective tissue, specific joints,…etc.), so then the active B. burgdorferi bacterium is only found in the blood under certain circumstances. For this reason, Lyme disease was originally tested for by microscopic examination of infected tissues (biopsies). Of course, this approach was tedious and could sometimes only be performed post-mortem. Currently there are a variety of testing methods available, including blood and urine testing which might utilize PCR, Western Blot, B. burgdorferi antibodies (IgG, IgM), and T-cells tests (Enzyme-Linked ImmunoSpot assay/EliSpot). As mentioned above, the only recognized testing by the CDC is two-step testing with two positive results via western blot or EIA — many believe that this leaves room for frequent false negative testing since we know B. burgdorferi can be difficult to identify in the bloodstream. Additionally some of these tests can be obscured by poor immune status and won’t result in a positive response even if the patient is infected. Immune cells themselves can be infected by Lyme, thus compromising replication and resulting in lower than normal antibody counts.

Where Do We Go From Here?

At Ravel Health we are looking to revolutionize the way patients with Lyme disease are treated — both as individuals and in their medical care. It is our vision to set a new standard for Lyme care by offering an improved patient experience that is accessible and affordable. We have curated experts in the field and are creating a space where knowledge is being pooled, shared, and then ultimately translated into streamlined care for patients with chronic Lyme illness. This means taking into account the fickle nature of this infection, the need to address co-infections, the validation that Lyme exists throughout the United States (and the world), the utilization of clinical diagnoses when laboratory testing falls short, and ultimately moving the needle forward in the medical discourse on chronic Lyme illness.

Clinically speaking, many “Lyme literate” physicians and leaders in the field have been successfully treating chronic Lyme disease for years — these treatments are often not singularly aimed at B. burgdorferi alone, but also the co-infections mentioned above. Nonetheless, the medical consensus on chronic Lyme disease remains unsettled and research continues to evolve on this topic. In the past, this controversy has been referred to as the “Lyme Wars” — although we hope this battle is slowly being diffused, we will learn more about both sides of this conversation in the part 3 of this blog series.

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By Dr. Rachelle Forsberg