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What's the Deal with Chronic Lyme Disease?

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Last week, Bella Hadid was honored for her work raising awareness for Lyme disease at the Global Lyme Alliance's second-annual Uniting for a Lyme-Free World gala. As any Real Housewives of Beverly Hills fan knows, Bella's mother Yolanda was diagnosed with Lyme disease in 2012, and she's been dealing with complications ever since. (You may remember Gigi Hadid honoring her mother's Lyme disease battle at the event last year.) Bella and her brother Anwar were diagnosed shortly afterward, and they also continue to be treated for Lyme disease. At the event, Bella told Us Weekly what it's like to live with Lyme: "Usually I'll wake up from some kind of bone pain, then have to fall back asleep," she said. "I'll fall back asleep, then sleep until 12 p.m., but that's just with a 14-hour sleep already [and] I'm still tired." Sounds pretty terrible if you ask us.

What is Lyme disease and how do you get it?

According to the CDC, Lyme disease is caused by a bacteria called Borrelia burgdorferi, which is carried by black-legged ticks. If you get bitten by a tick carrying the bacteria, you get the disease. Early signs of infection include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes, as well as a distinctive bulls-eye-shaped rash called Erythema migrans (EM). Seventy to 80 percent of people who get Lyme disease show symptoms within the first 30 days, but some don't realize they've been infected for months afterward, like the Hadids. For those who don't stop the infection in its tracks 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.

Lyme disease is usually diagnosed via the presence of the symptoms mentioned above, especially EM, as well as evidence of possible exposure to ticks that carry it. In other words, if you haven't been in an area where black-legged ticks live (you can check out a full list of areas in the U.S. here), you probably won't be tested for Lyme disease. While there are blood tests that check for antibodies that indicate a person has been infected, they are not usually used in diagnosing the disease because sometimes people who have been recently infected may not have antibodies yet. Once it's determined that someone has Lyme, antibiotics usually take care of it within two to four weeks.

But what about "chronic Lyme disease"?

The thing that makes the Hadids' Lyme disease different from what's described above is that they're still dealing with it, even after antibiotic treatment. Here's where things get complicated: the Hadids explain what they have as "chronic Lyme disease." Chronic Lyme disease, however, is not a medical diagnosis and there has been some controversy over whether the condition is legit or not. John Aucott, M.D., assistant professor of Medicine and Director of the John Hopkins Lyme Disease Clinical Research Center, explains: "Chronic Lyme disease is just 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. 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. According to Dr. Aucott, there is, however, a defined condition that affects approximately 10 percent of people who get Lyme disease, which is called post-treatment Lyme disease syndrome.

So, what's "post-treatment" Lyme disease?

Post-treatment Lyme disease syndrome is different from chronic Lyme disease because it's a specific, diagnosable condition, Dr. Aucott says. Still, there aren't any medical tests that can prove you have it. When figuring out if someone has the condition or not, Dr. Aucott says "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. 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." The really scary thing about post-treatment Lyme disease 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, this was found to be ineffective. Dr. Aucott also notes that "there are not many active treatment trials or studies currently in the U.S. That's why the illness is so controversial. 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

So basically we have a disease that is real, but is super hard to diagnose, is widely confused with other conditions and is also impossible to cure. It's really a huge problem. "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.) Dr. Aucott points out that "Lyme disease keeps getting bumped off the radar screen by one high-profile disease after another (hello, Zika!). 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. That's why what the Hadids are doing is actually pretty awesome.

How to prevent Lyme disease in the first place

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 6 ways to protect yourself from ticks.) Dr. Aucott says that high season for ticks transmitting the disease is during the summer, since the new-stage ticks are very tiny and hard to see, but he says 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." And don't freak out—the majority of people who get Lyme disease are totally fine after antibiotics, but for the few who do deal with it on a chronic level, we hope a cure is found very, very soon.

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