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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Anna
06/20/2023 (11:19 am)
Approximately 7 years ago I tested positive for lyme disease after experiencing a wide variety of the symptoms listed above. I took the oral medication prescribed but then didn’t test again to see if it was truly gone. Since then, the symptoms have returned in waves and I recently tested again and it came back positive.
Do you think I had it the whole time, or could it be PTLDS (Post Treatment Lyme Disease Syndrome)?
Dr. Daniel Cameron
06/21/2023 (9:15 am)
I have patients who meet the clinical criteria for PTLDS. PTLDS can be from a persistent tick-borne infection. I have patients diagnosed with PTLDS who do well with antibiotic retreatment.
Terry
05/17/2023 (8:18 pm)
I was diagnosed with l lymes didease about 3 yr ago. I went thru antibiotic treatment. I now had back sugery to have a spinal cord stimulation device implanted for RSD and had bone growth removed that was squeezing my spinal cord. Can the lymes disease be making my recooperation from this surgery more painful and slower healing?
Dr. Daniel Cameron
05/18/2023 (11:24 am)
I have not seen research in this area. I have seen Lyme disease increase the severity of pain, likely through a ramp up of neurotransmitters
Pamela Baiilie
05/10/2023 (10:47 am)
I went tothe ER yesterday because I had been feeling really lousy for 2 days Flu like symptoms, achyness, headaches, shortness of breath, fatigue, low grade temp. I took Tylenol last night and an hr. later I had a 101.4 temp. I also have swelling and tenderness on the left side in my groun area. I’ve basically been in bed for 3 days now. I’ve had Lymes 3 times in my life, most recently was about 10 yrs. ago. That was the worst one. I had severe chest pain, excruciating. Thought I was having a heart attack. I had a chest x-ray yesterday which was fine and the doctor told me most likely I had the flu but he could not be definitive. Then I realized these were some of the same symptoms I had when I had Lymes. I just wonder if it could be a Lyme fare up? Any thoughts? I’m 66 yrs. old
Dr. Daniel Cameron
05/10/2023 (3:18 pm)
There are so many potential problems. I look for other issues first in patients i take care of.
RC White
03/18/2023 (9:16 pm)
Hello all,
This question concerns the possibility that stage III metastatic cancer could facilitate a lyme flare 20+ years after lengthy treatment with Rocephin.
2000: My wife had the lyme bullseye rash and positive titers, but suffered for 8 years before a Florida Dr finally agreed to treat her with Rocephin IV. She started 2 grams a day for 11 months via a Groshung catheter. (Basically following Dr Burrascono’s treatment protocol of the time). The fatigue, arthritis, confusion, and pain finally began to go away and life started to resemble normalcy.
2009: A melanoma was surgically removed from her calf and a groin sentinel lymph node was clear.
Late 2022-2023: Groin lymph nodes were swollen and painful. Metastaic melanoma was diagnosed. Apparently unsuccessful Keytruda immunotherapy followed, as did 2 lengthy surgeries to remove two-dozen lymph nodes. She has also had several PET and CT scans with contrast. Surgical pain and now lymphedema prevail.
Tonight my wife had an epiphany: The fatigue, arthritis, confusion, and pain she has now STRONGLY resemble the worst of her lyme days of 20+ years ago.
What do you all think? A melanoma cell hid for 13 years then found a blood vessel and took root.
Could a little bastard of a lyme spirochete hide for 20+ years, only to spring back to life when her immune system was too weakened to fight it off?
Would appreciate your thoughts and experiences.
Wishing you all happiness and good health,
Bob
Dr. Daniel Cameron
03/20/2023 (7:15 am)
I have seen cases where I have suspected Lyme disease after stress, illness and an accident. I suspect the immune system response to the event allows for a recurrence. It could also be that the illness is pushing the same immune response pushed by the Lyme disease. I advise my patients to work with their other doctors to rule out other medical causes. All the best
Sabine
02/24/2023 (11:10 am)
My son was diagnosed with Lyme disease 2x (once at 5 years old, then again 10 years old). Both times were treated with antibiotics. He’s 16 now, but we’ve had so many issues and I’m convinced it’s related to the Lyme disease – but I’m being told there is no way for flare-ups as he’s been treated at the time. Can a flare up happen even though the original infection has been treated with 20-days of antibiotics / orally taken?
Dr. Daniel Cameron
02/26/2023 (7:42 am)
A third of individuals treated for Lyme disease were sick on years after treatment in large cohort studies. That means two thirds did well. I encourage my patients to look at a persistent infection or new infection again.
Dr. Daniel Cameron
02/28/2023 (12:22 pm)
I have patients who have been successfully treated after 20 days of treatment. I would add a doctor with experience treating chronic problems related to Lyme disease to your team of doctors.