Many people have heard of Lyme disease, but only a few can actually explain what it is and how the symptoms work. Unfortunately, this doesn’t include the vast majority of medical professionals, most of whom are still very much in the dark when it comes to Lyme. Most people know that you can only catch the disease from tick bites, but will dismiss it as an entirely East Coast phenomenon, only dangerous if you happen to go hiking in the deep woods of Connecticut or Maine. In reality, Lyme is a lot more dangerous and insidious than people believe, and one of the main problems confronting both patients and doctors alike is the lack of a stringent diagnosis. But why exactly is Lyme so hard to diagnose, and how can we solve this problem?
The first thing to bear in mind is that Lyme isn’t hard to diagnose, or treat, if it’s caught in its early stages. That qualifying statement is probably the most important thing for people all over America to remember. The first stage of the disease, known as acute Lyme, begins a couple of days after the initial tick bite. The symptoms are flu-like, and include stiffness, aches and pains, fatigue, headache, fever, and congestion. These symptoms won’t necessarily be severe, and reactions will differ from patient to patient. That’s why it’s important to be vigilant for the telltale symptom of Lyme: a bullseye rash, which consists of a red mark on the site of the bite, surrounded by another red ring, forming the bullseye shape. If this is present, it’s almost certainly a sign of Lyme, and medical intervention should be sought as soon as possible. However, this rash doesn’t appear in all cases, nor is it necessarily easy to spot when it does. This is why numerous cases of acute Lyme are routinely written off as a bout of flu, giving the bacteria a chance to progress to the next stage of infection.
This second stage is known as the chronic stage, and this is where Lyme gets tricky and controversial. The symptoms of the chronic stage of Lyme can vary wildly from patient to patient, but they generally include a sense of fatigue, constant aches and pains, loss of mobility, and possibly neurological and heart problems. These are extremely common symptoms in a number of other diseases, and unfortunately, Lyme is not the first thing that doctors will initially jump to. This leaves cases of chronic Lyme open to misdiagnosis, with some of the more common being Multiple Sclerosis, fibromyalgia, Parkinson’s, chronic fatigue syndrome, or autoimmune deficiency. This continued misdiagnosing and cloaking of its true nature is what gives Lyme its intimidating nickname: “The Great Imitator”.
Another hurdle standing in the way of steadfast diagnosis is that there is no definitive test for Lyme. There are certainly ways to test for the disease, but just because one of those comes back negative, it doesn’t necessarily mean you don’t have the disease. However, when you pair these negative results with a skeptical doctor – of which there are more than a few out there – it becomes almost impossible to diagnose the condition accurately. Upon receiving negative results, patients can be convinced that they’re not suffering from Lyme, or, if they’re convinced they have the disease, must find another doctor who’s open to the possibility and will happily retest them.
In fact, skeptical doctors are another large part of the overall problem. Lyme exists in a strange limbo when it comes to medicine in 2018; acute Lyme is a legitimate and treatable issue that all of the medical community accepts as fact. However, when it comes to chronic Lyme, many doctors aren’t convinced of its legitimacy. This suspicion is further compounded by the CDC not clearly acknowledging chronic Lyme, resulting in both patients and Lyme-literate doctors hanging in a suspended state of inaction. This leaves Lyme wide open to diagnoses of delusion, paranoia, or hypochondria, all of which are aimed at patients who try to speak out about their symptoms under the chronic Lyme umbrella. This keeps prospective patients from speaking up about Lyme, making the disease that much harder to diagnose.
Lyme is a very difficult disease to deal with. A combination of factors keeps it from being easily diagnosed; the propensity of the bacteria to mimic the symptoms of other, more “credible” diseases, a general attitude of apathy or suspicion in the wider medical community, and inconclusive test results all conspire to make diagnosis, especially on a broad and consistent scale, quite challenging indeed. Despite these apparent setbacks, however, the best weapon we have in the fight against chronic Lyme is education. If patients, doctors, and the public at large can educate themselves about the habits, effects, and symptoms of chronic Lyme, we’ll have a much better chance at a higher rate of successful diagnoses.