Exactly What To Do If You Think You Have Acute Or Chronic Lyme Disease
Clear skies, green grass, warm breeze—summer's almost here, and this weather's basically begging you to whip out those jean shorts and start dining al fresco. Maybe you'll even head to the park, spread out a blanket, and get some much-needed vitamin D. Sounds great, right? That is, until you look down at your bare legs and spot a creepy, crawly little monster that makes you doubt whether you ever liked nature to begin with—a tick.
Sadly, warm weather brings with it loads of ticks, and thereby Lyme disease—that notorious infection caused by the bacteria Borrelia burgdorferi, which is transmitted to humans through a bite from an infected black-legged or deer tick. Currently, the Centers for Disease Control and Prevention (CDC) estimates that 300,000 people contract Lyme disease in the U.S. every year—but many experts believe the true number of cases is much higher and that many people go undiagnosed (due, in part, to ineffective diagnostic tests).
Even if you don't personally know someone who's had Lyme, you likely have at least a rough understanding of its complexity, thanks to celebs, like Avril Lavigne, who have been vocal about their severe Lyme symptoms, and wellness influencers like Jordan Younger, who chronicles her battle with chronic Lyme on Instagram.
While there are plenty of strategies to help protect yourself from Lyme disease (like knowing where it's most common and how to properly remove a tick), so many people who contract Lyme end up suffering because neither they nor their doctors know how to identify the highly variable symptoms. If caught and treated early (in its acute stage), Lyme can often be resolved, but if Lyme goes undetected (or is treated inadequately), then you could be setting yourself up for chronic Lyme, which is significantly more debilitating.
This is why educating yourself on the various ways Lyme can manifest itself is so important. Here, we discuss the symptoms of acute vs chronic Lyme disease and how to get the help you need.
Acute Lyme: symptoms + what to do if you think you have it.
Acute Lyme simply refers to Lyme disease in its early stages, shortly after you've been bitten and infected by a tick. The good news: Many people who promptly get diagnosed and treated with acute Lyme disease have a great chance at getting better. The bad news: It's often missed, which leads to chronic Lyme.
Early symptoms of Lyme disease.
The following are the most common symptoms of Lyme in its early stages, but not all of these symptoms will necessarily be present:
- Muscle pain
- Joint pain
- Neck pain
- Difficulty sleeping
- Bull's-eye rash (this looks like a bug bite with a ring around it)
What to do if you think you have it.
If you're noticing these early symptoms of Lyme disease, you want to call your doctor ASAP. "We know that early treatment gives you the best opportunity to get rid of Lyme," says Darin Ingels, N.D., naturopathic doctor and author of The Lyme Solution.
A Lyme diagnosis should be a clinical diagnosis—meaning, based on your medical history, symptoms, and exposure to ticks. So if you have enough symptoms and you live in an area with Lyme, your doctor may choose to put you on a treatment protocol even without a lab test.
Getting a diagnosis can be complicated, however. On big reason: Many doctors aren't super familiar with Lyme and rely too heavily on blood tests (an ELISA test, and then, if that's positive, a Western blot test) to diagnose patients—and these tests are far from precise. They measure the patient's antibody response to the infection, not the infection itself, and they're most likely to be accurate once you've been sick for a few weeks. So, if you're tested too early, you're more likely to get a false negative (although, you could get a false negative at any time).
If you're lucky enough to get a quick diagnosis, most doctors will put you on the CDC-recommended 21-day course of antibiotics—and for many people, this takes care of things. But sometimes, symptoms persist.
"I would say the chance of recurrence would be 20 to 25 percent,” says Richard Firshein, D.O., NYC-based integrative physician. That's why some doctors—typically those who specialize in Lyme, called Lyme-literate doctors (LLMDs)—choose to follow the treatment guidelines outlined by the International Lyme and Associated Diseases Society (ILADS), which recommends antibiotic treatment for four to six weeks and additional treatment if symptoms recur.
So, if you strongly suspect you've recently contracted Lyme disease, but your doctor decides not to treat you based on your negative test results, it's worth getting a second opinion from a doctor who specializes in Lyme. The LymeDisease.org physician referral tool is a useful resource for finding a qualified doc in your area.
Important to note, however, is that not all Lyme specialists are created equal, and they can have wildly different treatment approaches (some doctors strictly use antibiotics, some use a combo of antibiotics and herbs, and some use solely natural herbal protocols). So it's important to choose one whose approach aligns with your values.
Chronic Lyme: symptoms + what to do if you think you have it.
"Lyme has the potential to become chronic Lyme after about three weeks from your initial exposure to Lyme [via a tick bite]," says Firshein. At this point, symptoms can start to change or evolve. This can happen if someone is not treated for their acute Lyme, or if they've been inadequately treated and symptoms persist (the latter often being referred to as post-treatment Lyme disease syndrome).
Some doctors also believe it's possible for your immune system to keep Lyme at bay for months or even years after you've been bitten by an infected tick, only to have symptoms crop up after some sort of traumatic or intensely stressful event that compromises the immune system.
"I think it could be dormant for almost a whole lifetime," says Bill Rawls, M.D., integrative physician and author of Unlocking Lyme, who believes he contracted Lyme and other tick-borne microbes as a child but didn't develop symptoms until he "trashed" his immune system working intense hours as an OB-GYN. "Most of my patients don't remember a tick bite; most say something like, I got sick when my house burned down, or my business collapsed, or my wife left me, or when I got in a car accident—after this insult that affected their immune system."
A couple of reasons Lyme can become increasingly problematic over time: Borrelia burgdorferi is a corkscrew-shaped spirochete that can essentially drill into tissue, allowing it to infect pretty much any area of the body. Additionally, it can form a slimy biofilm that allows it to "hide out" from antibiotics and resist treatment.
Symptoms of late-stage (chronic) Lyme disease.
It's often hard to define "typical" symptoms of chronic Lyme disease, as they can vary wildly from person to person and affect nearly every part of the body. Because Lyme is a multisystemic illness, you'll likely notice a cluster of symptoms such as:
- Joint and muscle pain
- Numbness and burning sensations
- A stiff neck
- Light and sound sensitivity
- Difficulty falling asleep and staying asleep
- Memory and concentration problems
- Chest pain with palpitations
- Psychiatric symptoms such as depression and anxiety
Interestingly, Kristin Reihman, M.D., family medicine doctor and author of Life After Lyme, says she often notices that her patients fall into one of two camps: those with debilitating joint pain and those with brain fog and fatigue. But you can definitely have both—"Lyme can really do anything," she says.
Other important indicators you might be dealing with chronic Lyme:
- You have good days and bad days, without having changed anything in your diet or exercise regimen.
- Your pain migrates around the body. One day it might be predominantly in your knees and the next day your ankles.
- Your symptoms worsen right around your cycle, as Lyme symptoms are known to change with fluctuating levels of estrogen and progesterone.
What to do if you think you have it.
Obviously, you want to see a doctor if you think you have chronic Lyme. But keep in mind, all the issues outlined above regarding ineffective diagnostic testing become that much more problematic when Lyme is considered chronic.
"The test was designed for acute exposure," says Ingels. "It measures quantity of antibodies. So if you're someone who might have been exposed 10 years ago, we know your immunity naturally wanes with time, and it's possible that your quantity of antibodies has gone down. Your body starts to treat it like it's part of you."
So in this case, seeking out a Lyme specialist who will diagnose you based on all of your clinical symptoms (not solely on lab tests) may be in your best interest. A specialist will also be able to help diagnose you with co-infections such as babesia, which are often passed along to you by ticks with Lyme.
Reihman, for example, will use antibiotics if a patient wants to (usually for acute Lyme, when they're most effective) but typically treats patients with some sort of herbal protocol. She also advises patients on ways to support their body's detoxification pathways (with things like chlorella) and bolster their immune system (think: more sleep and a good probiotic), both of which can help minimize symptoms and speed Lyme recovery.
For both acute and chronic Lyme, supporting your immune system is crucial.
Regardless of where you are in your Lyme journey (and even if you're just trying to prevent it), many respected integrative practitioners who treat Lyme believe that a strong immune system can make all the difference in your body's ability to minimize your symptoms and make you much more responsive to treatment.
"Is it possible to have Lyme and not get sick, or to have an acute infection and get over it by yourself? Absolutely. There are some people who encounter Lyme and their immune system just handles it—knocks it back and just walls it away," says Reihman. "That's why the focus of my Lyme interventions really center on the immune system."
So, what are some basic ways to support your immune system if you have either acute or chronic Lyme? Nourishing your body with nutrient-rich whole foods, healing your gut if it's compromised (80 percent of the immune system resides in the gut), getting plenty of deep sleep, exercising to tolerance (but not overdoing it), and minimizing stress are a few solid strategies.
If you have another chronic condition, such as an autoimmune disease, your immune system is already taxed and even less well-equipped to handle Lyme. In that case, making these healthy lifestyle changes becomes even more important.