Madison Area Lyme Support Group

by Jennifer Crystal

Before becoming so debilitated by illness that I could not work, I was a high school English teacher. My ninth grade students read Shakespeare’s Romeo and Juliet, and I’ll never forget our discussion of the lines: “What’s in a name? That which we call a rose/ By any other word would smell as sweet” (Act 11, scene ii).

Juliet is suggesting that the name we give someone or something is to an extent meaningless. To test this theory, I had my students write down the name of someone they loved. Then I told them to spit on the paper and tear it up. They were horrified.

“But it’s just a name,” I told them.

“No,” they argued. “It has an association. I can’t spit on someone I love.”

Years later, I think of that conversation when I hear people debate the nomenclature of Lyme disease. The Lyme Wars we so frequently hear about-covered in a five-part special on NBC New York and also in a New Yorker article -focuses on whether chronic Lyme actually exists. The name suggests a persistent, ongoing illness, like chronic obstructive pulmonary disease (COPD) or lupus. Those are recognized diseases whose injury and severity are not called into question, no matter how long the patient has suffered, how long it took them to get diagnosed, or whether or not the patient is undergoing treatment. Conversely, the Centers for Disease Control and Prevention (CDC) doesn’t recognize the term chronic, stating that “post treatment Lyme disease syndrome” (PTLDS) is the more appropriate term. Here the name we give to something actually matters very much.

Chronic Lyme is not the same as PTLDS. Post treatment Lyme disease syndrome assumes that a patient has undergone treatment and still has symptoms. Unfortunately, this is not the case for the vast majority of Lyme sufferers. Some patients do have persistent symptoms after treatment, but even those people cannot be gathered under one umbrella. For there are mitigating factors such as how long the person was sick before diagnosis, how long they were treated, how they responded to treatment, whether the infection crossed the blood-brain barrier, and whether the patient also has co-infections- these factors impact whether a patient will have persistent symptoms or not. No two cases of tick-borne illness are the same, meaning it’s very difficult, if not impossible, to lump those cases together

Chronic Lyme is at least a more appropriate term because it doesn’t define whether a person has undergone treatment or not. Usually, they haven’t. The reason Lyme often (though not always) becomes chronic is because it was misdiagnosed and left untreated in the first place. Under such conditions, the Lyme bacteria spend months or years replicating and circulating around the afflicted person’s body, sometimes crossing into the central nervous system. That’s what happened to me. Lyme coiled itself into my bones, joints, muscles, cells, and brain for eight years before I was accurately diagnosed. Eventually, treatment got me into a manageable state of remission, but because I had been sick for so long, I cannot be cured. Therefore, my Lyme is chronic-meaning recurring and difficult to eradicate.

My case is very different from someone who was only sick for two years, or who doesn’t have co-infections or has responded to initial treatment differently than I did. The same is true for cancer patients. A stage I breast cancer patient has a very different illness, treatment plan and prognosis than a Stage IV glioblastoma patient. They both have cancer, but when naming their illnesses, we don’t just group them together under the “C” word. Lyme disease should also be spoken of in more specific terms.

In her talk “Lexicon of Lyme” at last year’s International Lyme and Associated Diseases Society conference in Boston, Dr. Mualla McManus of the University of Sydney, Karl McManus Institute said, “Lyme disease is a household name-everyone talks about it, but no one defines it in a precise fashion.” I couldn’t agree more. There are now three recognized stages of Lyme disease, but many people don’t know about this breakdown in levels. Stage 3 is called Late Disseminated Lyme Disease. It would behoove us as patients to use this more precise wording instead of “chronic Lyme”-and certainly instead of the generic “PTLDS”-so that people can better understand the progression and prognosis of our illness.

Moreover, it’s important for us not to couch co-infections under the term Lyme disease and right now that’s all too common. These other infections are also transmitted through a tick bite; they are similar but are not the same as Lyme. For instance, it’s possible for a patient to get ehrlichia but not get Lyme disease. In another case, a patient may have Lyme and babesia, while another one might have babesia and Bartonella.

People need to understand that there are many tick-borne diseases out there and that have different symptoms from Lyme and often require different treatment. Though it’s wordy, I try to tell people that I have “chronic tick-borne diseases” rather than “chronic Lyme dis-ease,” because that phrasing is more accurate. In the future, I’ll try to say “chronic late dis-seminated tick-borne illness.” Is that a lot to throw at someone at a cocktail party? Yes. But the person I meet there wouldn’t want me to call him Jack if his name is really James. As my students discovered, there’s a lot in a name, and it’s important that we use the right ones to describe our illnesses with as much precision as we can.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com