7 Unexpected Signs Of Lyme Disease Experts Want You To Know About
A girl holding her head because of pain while lying down on a sofa due to Lyme disease

There is no disease in the world like Lyme Disease. Few other illnesses have so many varied manifestations, are so difficult to test for, or take over your entire body like Lyme does. Many people with Lyme go undiagnosed because the symptoms of Lyme Disease can vary from person to person and overlap with symptoms of other illnesses. However, Lyme has a few hallmark symptom patterns that distinguish it from other conditions.

Early-stage cases of Lyme are more uniform: You may notice a rash resembling a bull's eye at the site of the infection, as well as joint pain, fatigue, fever, chills, headaches, and/or swollen lymph nodes. It's when the illness becomes chronic that it starts showing up in all sorts of weird ways. The many symptoms it can cause include neurological issues like twitching, tingling, and tremors; psychological ones like anxiety, depression, and rage; abnormal heart rhythms; overactive or painful bladder; and sleep disturbances. And those are just a few.

"Lyme disease patients can mimic another chronic disease such as Fibromyalgia, Chronic Fatigue, and a mood disturbance," Daniel Cameron, MD, MPH, an internist and epidemiologist who specializes in treating Lyme, tells Bustle. "The worst symptoms of Lyme disease may be severe fatigue, disrupted sleep, poor concentration, mood disturbance, headaches, lightheadedness, and joint pain. Individuals with Lyme disease are frustrated by severe flare-ups, unbearable symptoms, and flare-ups with antibiotics, refined sugars, stress, and alcohol. It can be frustrating for patients when the doctor overlooks Lyme disease as the big picture."

Most doctors are not trained to look out for signs of chronic Lyme, and the standard ELISA and Western Blot tests produce many false negatives, Kristin Reihman, MD, family medicine doctor and author of Life After Lyme, tells Bustle. Therefore, the International Lyme and Associated Diseases Society recommends making "a clinical diagnosis based on the history and physical findings, and supported by appropriate laboratory tests when they are indicated."

If you think you might have Lyme, filling out the Horowitz Lyme-MSIDS Questionnaire is a good place to start figuring it out. In addition, here are some symptom patterns that sometimes point toward Lyme.


New Symptoms Keep Appearing And Disappearing


One classic characteristic of Lyme Disease is that symptoms come and go. Many Lyme patients find that their symptoms flare up in two- to four-week cycles. "You might feel better for a couple weeks and have a week where you just feel lousy," says Reihman. The periodic disappearance of symptoms can make you start to doubt if you're even sick, but the symptoms will come back again without proper treatment, so take them seriously, no matter how fleeting they are.


Your Pain Moves Around Your Body

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Another hallmark sign of Lyme is migratory pain — that is, pain that travels from one body part to the other. You might, for example, find that your right knee is hurting one day and your left knee is hurting the next. Common kinds of pain associated with Lyme include joint paint and nerve pains that create shooting or zapping sensations, says Reihman.


You're Hypersensitive To Your Environment

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Lyme can put your immune system into overdrive, causing intolerance to unpleasant smells, moldy rooms, and chemicals, says Reihman. This can cause exaggerated side effects or allergic reactions to medications. Some people with Lyme also have unusual food allergies like Alpha-gal syndrome, an allergic reaction to red meat. "A lot of people with Lyme struggle with an immune response that is both robust and ineffective, as if it is targeting the wrong things," says Reihman.


Your Symptoms Change When You Take Antibiotics


When diagnosing a Lyme patient, Reihman will take note if they've ever experienced a flareup from antibiotics. This is called a Herxheimer reaction or Herx. "When Lyme is killed, it releases toxins, which are inflammatory to the body and create more symptoms," Reihman says. A Herx reaction is often a sign that someone has killed off Lyme bacteria without properly supporting their body's detox mechanisms. However, other people with Lyme will get better on antibiotics, since the bacteria are being killed. So, improvement of symptoms after taking antibiotics, even for something unrelated, is another sign someone could have Lyme.


You Feel "Tired And Wired"

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Lyme never sleeps, which means that people with it often have trouble sleeping as well. It's common for those with Lyme to report having trouble falling asleep, waking up throughout the night, and waking up earlier than intended. One study in Sleep even found that 100 percent of Lyme patients had sleep issues. Even when they do get lots of sleep, the fatigue caused by Lyme can make people feel like they haven't slept at all. Yet Lyme's effects on the adrenal gland and hypothalamus can leave people feeling hyperactive and jittery even as they are sleep-deprived, says Reihman. So, many Lyme patients describe themselves as "tired and wired."


You've Been Diagnosed With Another Condition Without A Known Cause

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"Like its cousin Syphilis, which is also caused by a spirochete bacterium, Lyme is called 'the great imitator' because it can impact any organ system or tissue of the body," says Reihman. So, when someone is diagnosed with a condition that has no known cause, the cause is sometimes Lyme. Conditions that can stem from Lyme include Fibromyalgia, Multiple Sclerosis, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Interstitial Cystitis, Autism, ADHD, Alzheimer's, chronic pelvic pain, Rheumatoid Arthritis, chronic migraines, hyperthyroidism, hypothyroidism, and Amyotrophic Lateral Sclerosis, as well as a number of mental health conditions.

"If the diagnosis doesn't have a known cause or cure and you're not satisfied with that as an answer, it's worth it to look into getting treatment for Lyme and seeing if that makes a dent in your symptoms," says Reihman.


You're Suddenly Struggling With Mental Health


Lyme can cause inflammation of the brain, leading to mood swings, crankiness, anxiety, depression, and rage. "Someone who's even-keeled their whole life and suddenly becomes really irritable, agitated, forgetful, and fearful — I would consider a Lyme diagnosis," says Reihman.

If you're exhibiting these symptoms or any other signs of Lyme, look for a Lyme-literate doctor who will take your concerns seriously. It might be Lyme or it might be something else, but it is real and you deserve to feel well again.