What does a Lyme flare-up feel like? Ask the Lyme Doc.
Lyme disease is a tick-borne illness that can lead to unpredictable disease flare-ups and remissions. The best know flare-up is called a Herxheimer reaction. A Herxheimer reaction was first identified in patients with syphilis and occurs when the body reacts to endotoxin-like products released by the death of bacteria in the body after starting an antibiotic. A flare-up may occur following a trigger or as part of the illness.
When a Lyme disease flare occurs, patients will notice a return of the symptoms they have experienced before or a worsening of existing symptoms. Some patients may also develop new symptoms. A flare-up can come and go and vary in intensity. What does a Lyme flare-up feel like? The symptoms of a flare-up can include:
- an increase in fatigue
- problems with memory and concentration, sometimes referred to as ‘brain fog’
- extreme sensitivity to bright lights, heat, cold, and noise
- muscle stiffness
- mood changes (including irritability)
- poor quality sleep
- dizziness
- numbness or tingling in hands and feet
- widespread muscle pain
- blurred vision
- general body pain
What triggers a flare-up?
One of the best ways to prevent a flare is to determine what might be causing it in the first place. These causes are called triggers. Triggers for Lyme disease vary by person, but they can include:
- emotional stress (such as a divorce, death in the family, or accidents)
- physical stress to the body (i.e., surgery, physical harm, concussion)
- life stress or stressful events
- infections, colds or viral illnesses
- exhaustion
- diets including processed sugars and alcohol
- menstrual period
- lack of sleep
- traveling and/or changes in schedule
- changes in treatment
How do you prevent a flare-up?
There are ways to help prevent a flare-up but most importantly, patients need to listen to their bodies and identify triggers that set off a flare in symptoms. Following are several ways to prevent a flare-up:
- Treat your Lyme disease
- Reduce your stress
- Get enough rest and sleep
- Stay away from foods that make you feel worse, including alcohol and processed sugars
- Learn to pace yourself to avoid doing too much when you are feeling well
- Keep up your health
- Stay hydrated
- Work with your doctor to get your symptoms under control
- Some people find ‘positive thinking’ helpful
- Try focusing on the things you can do, rather than those you can’t
- You might find a mental health provider helpful
Editor’s note. What does a Lyme flare-up feel like? Ask the Lyme doc sponsored by Dr. Cameron
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Ellen
03/10/2024 (5:47 pm)
I have a question about Chronic Lyme with regard to a flare. If treated the first time with a combination of drugs, would a chronic flare need to be treated with the same combo of drugs?
Dr. Daniel Cameron
03/11/2024 (7:57 am)
I have patients who do well with the same combination and some that don’t. The spirochetes can’t learn much as they don’t divide as fast a viral infection and they don’t move from person to person. It may be related to the persister hypothesis.
Carrie Thompson
03/09/2024 (4:29 pm)
I got Lyme disease and was never anywhere near where ticks are. I never saw one or had a bite or rash. My thumb knuckle was achy. The doctor asked if my fingers were always swollen. I said no and I didn’t know they even looked liked they were. Blood test and found out I had Lyme disease and was put on antibiotics for a week. They said it was gone. From reading subs of your comments; I’m wondering if it cured me or is still there or can come back if not bitten. I am exhausted and fatigued a lot. Had a time off intense migraines but went away without treatment. Still tired a lot. Now, hard to remember things! During conversations, trying to remember things, trying to name an object that everyone knows obviously. Something really simple to recognize. So, what are your thoughts, medical people, and experiences, patients? Thank you!
Brian Klemm
01/15/2024 (10:14 am)
I had Neurological Lyme after being bitten by a tick 5 years earlier and not diagnosed. I was finally treated in 1999 with 600 mg Zithromax followed by IV rocefen for 3 months. I have not had a relapse and never needed to go on antibiotics since then, though at times sx may appear. I work hard at keeping my immune system healthy with exercise, sleep, diet and minimal stress.
I recently had my first shot for allergies (dogs/cats/trees/grass) and I had an extreme hypersensitivity reaction with a red/mottled rash all over my body especially trunk and myalgia. I was put on 6 day Medrol dose pack. The rash dissipated, but I can’t sleep because of persistent back pain and leg pain that is severe, worse at night.. Could this be due to relapse of Lyme or an immune response issue to antigen-antibody (i.e. Type III Hypersensitivity Response). Where do I go from here to get relief? Any ideas?
Claire Swensen
01/06/2024 (9:49 am)
I’m 62 years old and was diagnosed with Lyme Disease in July 2023, after my rheumatologist identified (what I thought was a blood clot) a erythema migrans rash on my upper thigh. Initially I was treated with Amoxicillin for two weeks (due to a previously perceived intolerance of doxycycline). However, after the treatment, I started to have increased joint pain in neck, back, and knees. My rheumatologist prescribed a course of prednisone, which tamp down the symptoms. But a couple of weeks later my knee was hurting worse, and it swelled with fluid. I saw a sports medicine doctor diagnosed it as Lyme Arthritis. at that point, I was willing to try doxycycline at his recommendation, which I took for one month, my knee was also injected with a steroid. This was well over the initial diagnosis at the beginning of July. My rash never went away, fully. In October I had Covid (second time), then, had a bad respiratory infection in December. Recently, the erythema migraines rash has deepened in color and exhibited an outer partial ring. My doctor is retesting for Lyme. The preliminary test result is equivocal. I’m certain he’ll run the test again within 14 days. It’s hard to decipher whether my symptoms have resurfaced, because I have a systemic, inflammatory, autoimmune disease, though I remain active. I’ve had an uptick of dizziness, which I routinely suffer from due to a damaged vestibular system. It seems strange that my rash never went away. In my 62 years, I’ve never previously tested positive for Lyme disease. This is all new to me— not in a good way! Would doing another round of doxycycline be recommended? Should I have some further testing, for instance, a biopsy? Thanks in advance for your response.