Learn the ten critical symptoms of Lyme disease that you should never overlook and understand why early diagnosis and treatment are essential.
Lyme disease is sometimes called “The Great Imitator” because its nebulous symptoms mirror so many other conditions. Particularly in the early stage of disease, Lyme causes symptoms such as fever, malaise, fatigue, and joint aches that are often passed off as the flu. If Lyme is not treated right away, the bacterium, spirochetes called borrelia Burgdorferi, replicate and move to other parts of the body like the joints, heart, and nervous system. Symptoms then begin to look like those of lupus, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), rheumatoid arthritis, Epstein-Barr virus, and other conditions. There are, however, certain symptoms that can point to Lyme or co-infections and can help a doctor with a differential diagnosis:
1. Erythema Migrans (EM) rash: A Lyme disease rash is commonly referred to as a “bullseye rash” because it often has a target-like shape. However, the rash can also take on other forms such as blotchy spots or a solid oval. They can be red but also may look blue or purple depending on skin tone. EM rashes tend to expand, and do not itch. They also can show up in multiple places on the body in later stages of the disease. If you have a “bullseye” rash, you unequivocally have Lyme disease and should be immediately treated. But if you have any other type of rash and any other symptoms of or risk factors for tick-borne illness, you should be evaluated for Lyme. It’s important to note that while EM rash is a telltale sign of Lyme, not everyone gets or notices a rash. (For more, see “Not All Rashes Are Created Equal.”)
2. Migratory pain: Many illnesses cause body aches, but a differentiating factor about Lyme pain is that it tends to move around the body (migrate). One day you might have pain in your left knee; the next it might be in your right elbow. By contrast, rheumatoid arthritis is more likely to present with equal pain on both sides of the body (both knees or both elbows might hurt).
3. Stiff neck: A stiff neck can be a sign of Lyme meningitis, a manifestation of neurological Lyme. Lyme meningitis can be very serious, so if you have a stiff neck—whether you know you have Lyme or have not yet been diagnosed—it’s critical to be evaluated.
4. Facial palsy: Facial palsy is muscle weakness that causes one or both sides of the face to droop. It can be caused by neurological Lyme disease. Facial palsy is often referred to as Bell’s palsy, but they’re actually not the same; Bell’s palsy is specific to one side of the face, while facial palsy can affect one or both sides. (For more, see “Lyme Disease Facial Palsy: Difference Between Bell’s Palsy & Lyme”.)
5. Neuropathy: Neuropathy is a tingling or burning sensation in the arms, legs, hands, or feet. For me, it felt like my feet were on fire. For others, it feels like pins and needles. Neuropathy can be caused by neurological Lyme disease. (For more, see “Managing Burning Extremities: Lyme Disease Burning Sensation”.)
6. Fatigue: The fatigue of Lyme disease is nothing like the fatigue of a long day or a heavy workout. It’s not fatigue brought on by depression. It’s a bone-shackling feeling that can leave you completely bedridden. Without exaggeration, I liken it to running a marathon, and then waking up with both the flu and a hangover. Extreme fatigue should always be taken seriously and not be brushed off by a medical provider. It can’t be cured with rest or caffeine; it is often a sign of an underlying infection, like Lyme, that needs to be treated. (For more, see “Lyme Disease and Fatigue.”)
7. Heart palpitations or irregular heartbeat: These symptoms can be a sign of Lyme carditis, which can manifest in many different ways: “heart block” (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms); tachycardia (racing heart rate); bradycardia (slow heart rate); and myopericarditis (inflammation of the heart muscle and lining). Lyme carditis is very serious, so if you have any cardiac issues, you should be evaluated for tick-borne illness or you should let your LLMD know. (For more, see “A Matter of the Heart: Lyme Disease Carditis”.)
8. Shortness of breath: Shortness of breath can be a sign of many conditions, some of them tick-borne. It can be related to Lyme carditis, and also to POTS (Postural orthostatic tachycardia syndrome), which can be brought on by tick-borne illness. POTS occurs when moving from lying to standing causes an increase in heart rate by at least 30 beats per minute for adults and 40 beats per minute for children. It can also be characterized by lightheadedness, blurred vision, palpitations, intolerance to exercise, fatigue, and the absence of orthostatic hypotension (the blood pressure doesn’t drop when the heart rate rises). POTS can be associated with many conditions, so if you are diagnosed with it, make sure you are also evaluated for tick-borne illness as an underlying cause. Shortness of breath can also be a sign of air hunger caused by the tick-borne disease babesiosis.
9. Hypoglycemia: The summer that I got an EM rash on my arm, I suddenly started having low blood sugar reactions a few weeks later. At the time, medical practitioners and I did not think to connect the two events, but if we had, it might not have taken another eight years for me to be accurately diagnosed with Lyme disease, babesiosis, and ehrlichiosis. I later learned that hypoglycemia is a common sign of babesiosis. If you sudden develop problems with blood sugar, make sure your doctor looks beyond diabetes and hypoglycemia for another possible root cause. (For more, see “Stabilizing Blood Sugar During a Season of Sweets: Hypoglycemia and Lyme Disease.”)
10. Headache: Sometimes a headache is the result of a tough day, dehydration, or hormonal shifts. And sometimes, it’s caused by an underlying infection, especially one that can cross the blood-brain barrier like Lyme disease. During my worst periods of tick-borne illness, I had debilitating migraines several times a week. Severe headache can also be a sign of Lyme meningitis, which requires immediate treatment. If you have persistent or inexplicable headaches, make sure your medical practitioner considers Lyme disease. If you already have Lyme, tell your LLMD if your headaches worsen, as that could be a sign that Lyme is moving further into your brain. (For more, see “Not All Headaches Are Alike: What’s Causing Yours?” and “My Number 1 Headache Trigger? Lyme Disease”.)
The best way to determine if you have tick-borne illness is to be clinically evaluated by a Lyme Literate Medical Doctor (LLMD). Global Lyme Alliance can help you find one in your area here.
***
Jennifer Crystal
Writer
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.