Shania Twain, Justin Bieber, Bella Hadid—these are just a few of the people with infection. But what is Lyme disease, exactly?

By Julia Malacoff and Elizabeth Bacharach
Updated February 28, 2020
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While novel illnesses like the coronavirus COVID-19 tend to hog the spotlight, there's another disease that continues to make headlines as well: Lyme disease. Due largely in part to celebrities (Shania Twain, Justin Bieber, Bella Hadid, to name a few) speaking out about their Lyme disease diagnoses, the conversation surrounding the tick-borne pathogen is picking up. And it's about time.

Seriously—Lyme disease affects around 300,000 people each year, according to the Centers for Disease Control and Prevention (CDC). But because it's so hard to diagnose (tests can be iffy, symptoms mimic that of other infections), many patients get misdiagnosed or go undiagnosed, such as in the case of Bieber. Not to mention, the disease and it's so-called "chronic" version can be quite controversial in the medical community (more on that below).

Just as you're busy reading up on all things cold-and-flu (and, honestly, any other medical condition you're tempted to Google), you should get to know Lyme disease as well.

What is Lyme Disease and How Do You Get It?

Lyme disease is caused by a bacteria called Borrelia burgdorferi, which is carried by blacklegged ticks (aka deer ticks), according to the CDC. If you get bitten by one of these insects carrying the bacteria, and it's attached to you for at least 24 hours, you can become infected with Lyme disease. And if that happens, you can start to experience symptoms as early as three days after the original bite, according to the CDC. That said, some people don't realize they've been infected for months afterward.

What Are the Symptoms of Lyme Disease?

Great question. Early signs of infection include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes. You'll likely also develop a distinctive bulls-eye-shaped rash called erythema migrans (EM). In fact, EM occurs in 70-80 percent of people who get Lyme disease, often as one of the early—if not the first—symptoms, according to the CDC. The rash, which tends to be warm to the touch, begins at the site of the tick bite between three and 30 days after and gradually expands, reaching up to 12 or more inches (!!) across. (FYI: If your rash is begging to be scratched, it might be one of these itchy-skin conditions, rather than EM.)

If you don't recognize the signs and stop the infection right away, symptoms can escalate to more serious ones like joint, bone, and tendon pain, heart palpitations, severe headaches, and inflammation of the brain and spinal cord. (Related: The Symptoms You Should Never Ignore)

How Is Lyme Disease Diagnosed?

Usually, based on the presence of these earlier symptoms (especially EM), and the likelihood that you were exposed to ticks that carry it. In other words, if you haven't been in an area where blacklegged ticks live (they're most common in the Northeast and mid-Atlantic, but you can check out a map of areas in the U.S. here), you probably won't be tested for Lyme disease. There are also blood tests that check for antibodies that indicate a person has been affected—but they're not always the go-to diagnostic method for docs. That's because it can take several weeks for antibodies to develop, so you can test negative if you were infected recently. Other infections, including tickborne diseases or other viral, bacterial, or autoimmune diseases can also impact the test and cause a false-positive result, according to the CDC.

On top of that, a review of eight studies revealed that Lyme disease tests miss more cases than they diagnose. Plus, in a 2020 study published in the Journal of Clinical Microbiology, standard laboratory testing failed to accurately diagnose 71 percent of blood samples from individuals with an EM rash larger than 5 cm (about 2 inches). Clearly, diagnosing Lyme disease is no easy task—but more on that later.

Once it's determined that you do in fact have Lyme disease, your doctor will likely prescribe antibiotics such as doxycycline or amoxicillin. The course of treatment can range from 10 days to 4 weeks depending on the stage of the disease and symptoms, according to the U.S. National Library of Medicine (NLM).

But What About Chronic Lyme Disease?

The thing that makes, for example, the Hadids' Lyme disease different is that they're still dealing with it even after antibiotic treatment. Here's where things get complicated: Like many sufferers, the Hadids describe what they have as "chronic Lyme disease." Chronic Lyme disease, however, is not an official medical diagnosis, and there has been some controversy over whether or not the condition is legit. (Related: How to Talk to a Romantic Partner About Your Chronic Illness)

"Chronic Lyme disease is a general term that we avoid using because it means so many different things to so many different people. It isn't a specific diagnosis—it's more of a patient impression or concern that the doctor needs to figure out," says John Aucott, M.D., director of the John Hopkins Lyme Disease Clinical Research Center. "A lot of times it has nothing to do with Lyme disease because the patient just doesn't feel well and doesn't know why."

Since the symptoms of untreated Lyme disease are pretty general (pain, fatigue, cognitive issues), it can be really hard to spot a real case. There is, however, a defined condition that affects approximately 10 to 20 percent of people who get Lyme disease, according to research in the New England Journal of Medicine. It's called post-treatment Lyme disease syndrome.

What's Post-Treatment Lyme Disease?

Post-treatment Lyme disease syndrome (PTLDS) is different from chronic Lyme disease because it's a specific, diagnosable condition, says Dr. Aucott. Still, there aren't any medical tests that can prove you have it.

When figuring out if someone has PTLDS or not, "the key thing is that they were healthy, they got Lyme disease, they were treated, but never restored their health to their former healthy self," he explains. Basically, "they remained ill with this typical constellation of symptoms that includes fatigue, musculoskeletal pain, and cognitive complaints, such as short-term memory loss and difficulty concentrating."

While the verdict is still out on why some get PTLDS, recent preliminary research suggests that it might be the result of inflammation caused by a piece of the original Lyme-disease "shed" into the body. But, again, this was preliminary research so the causes of PTLDS are still considered TBD.

The really scary thing about PTLDS is that there is currently no way to treat it. While studies looked into the possibility of long-term intravenous antibiotics as a way to combat the disease, it was found to be ineffective, according to the National Institute of Allergy and Infectious Diseases (NIAID). "There are not many active treatment trials or studies currently in the U.S. That's why the illness is so controversial," says Dr. Aucott. "Nobody really knows the best way to treat it. It doesn't look like intravenous antibiotics are the way to treat it, but we don't know about other treatments because they haven't been studied."

The Current Lyme Disease Crisis

Basically, there's this very real disease, but it's super hard to diagnose, widely confused with other conditions, and also impossible to cure. It's a pretty huge problem. (Related: I Trusted My Gut Over My Doctor—and It Saved Me From Lyme Disease)

"This highlights the really urgent need to increase the research in this field," says Dr. Aucott, "because Lyme disease is spreading geographically and the numbers are increasing. If the numbers increase, there will be more and more people with post-treatment Lyme disease syndrome, and we really urgently need a way to better define it and better treat it." (It's true, as of summer 2015 Lyme disease had spiked 320 percent in the U.S., and in 2018, there was a total of 33,666 confirmed and probable cases of the disease, according to the CDC.)

Dr. Aucott points out that "Lyme disease keeps getting bumped off the radar screen by one high-profile disease after another (hello, Zika! Coronavirus!). It's honestly a very insidious illness that chronically debilitates people, but they don't die," like patients of other diseases do. As with depression, it's an illness where people may look fine from the outside, but they're disabled by the symptoms, he explains. As of now, the biggest roadblock to more research is a lack of funding, and until more awareness is created, that funding won't be possible.

How to Prevent Lyme Disease

If you're curious about the best way to prevent Lyme disease, the answer is simple: Don't get bitten by ticks. (If you're concerned, here are specific ways to protect yourself from ticks.)

But if you do get bitten by one of these bugs, remove the tick with fine-tip tweezers plyers by steadily pulling upward and then get rid of it by flushing down the toilet, throwing it out in a sealed bag, or putting it in alcohol. Whatever you do, do not crush it with your hands (...I mean, gross), says the CDC. Once removed, clean the bite area and your hands with rubbing alcohol or soap and water. Your chances of getting Lyme disease from a single tick bite depend on the type of tick, where you acquired it, and how long the bug was attached to you. Remember: Only blacklegged ticks transmit the Lyme disease-causing bacteria and they need to be attached to you for at least 24 hours before transmission, according to the CDC.

Dr. Aucott says that high season for ticks transmitting the disease is during the summer, but there's also a "second, smaller peak in the fall when the adult ticks are feeding, so we always see a second surge of cases in the fall." The CDC agrees, reporting that ticks are most active from April to September, which, ICYMI, is the same time people are more active as well. Ugh. But don't freak out—the majority of people who get Lyme disease are totally fine after antibiotics. (Related: Why I'm Actually Grateful for My Lyme Disease)

Comments (1)

Anonymous
March 1, 2020
I personally was misdiagnosed for lyme disease for 4 years having gone to over twenty doctors and specialists, inlcuding the head of the Yale infectious disease and lyme clinic (diagnosed me with fibromyalgia and proceeded to tell me chronic lyme disease is not a thing and its not possible for me to have it) as well as test negatively by the CDC. There's such an unbelievable amount of misinformation out there and the CDC fuels a lot of it- for example it's more like 30% of people who develop the rash after being bitten. Not 70%. I think it is misinforming that a lot of your information comes from the CDC and I don't think it's a coincidence that the CDC for decades refuses to believe in chronic lyme disease and now has created a new term ONLY for patients who were treated with the typical course of antibiotics and had the typical beginning symptoms but will agree that their pain in legitimate and deserves a title? As someone whose late teens and early twenties were destroyed from Chronic Lyme and failure of a diagnosis from the start, it's extremely disheartening to see that I still can't get the recognition for what I accomplished. The medical system failed me and couldn't properly diagnose me until I was bedridden and life ruined. Days like today when I'm still trying to recover my life and body from this horriffic disease, it angers me to still see so much misinformation on simple facts and continued acceptance of the idea that chronic lyme disease is fabricated by the patients, when these are the patients that suffer the most. Not to mention my incredible doctor who saved my life- Doctors and patients recieve no insurance coverage or the acceptance of the medical community!! He sees patients 7 days a week and put a bed in his office because he cares that much about treating the sick whom he's their last resort. I owe him my life and the fact that the medical community/ general population doesn't believe what he's treating is real- that's infuriating. I appreciate the intent of this article- i just believe it can cause more harm continuing to push inaccurate facts