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
Related Articles:
Herxheimer reaction in 13-year-old boy with Lyme disease
Can I consume simple sugar or alcohol if I have Lyme disease?
Clinical judgment leads to successful Lyme disease treatment in young child
Cathy Rooks
03/02/2022 (2:01 am)
I was diagnosed with acute Lyme disease and possible Rocky Mountain (?) fever over 8 years ago. Unfortunately, I have anaphylaxis allergies to all the antibiotics that could’ve helped me. I am also allergic (anaphylaxis) to ALL NSAIDs. There was an attempt to desensitize me with my allergist, but it was stopped quickly.
There’s no words to describe the pain …. Migraines are beginning to be more frequent every month, usually brought on by no sleep, I can’t sleep when my muscle and nerve pain are completely unmanageable …. Although I have never been tazed, sometimes that’s what I imagine that’s what it’s like. I recently moved to SC and I don’t think any doctor believes or understands. I need medication beyond Tylenol to be managed but pain meds do not seem to be available. I am 60 years old and now I spend 90% of my time in bed. I live full time on a lake, jetski, dock and a fun house… There’s no fun here. When my pain used to be managed I lived in life, that was fun.
The only time I was offered pain relief here, the doctor at the urgent care actually offered me toradol – I told her that’s an NSAIDs, she did admit that she already knew that but offered it anyway. Unbelievable
Vanessa Ribeiro
03/05/2022 (9:18 pm)
Night routine
I’m taking CBD
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
Kay
04/03/2022 (4:03 pm)
I don’t know if you had reactions to taking those meds but didn’t have an allergy test that identified them? You might want to consider povidone, an inactive ingredient that is in almost every pill, every NSAID I’ve looked at, and the local ER told me they stopped using Betadine because so many people have the Betadine or povidone allergy. But people take it in most of their pills. I did the Elisa act delayed lymphocyte allergy test I mentioned above, it identified things I never would’ve known were a problem, avoided them, but when I slipped up by having a medicine by a different manufacturer, I realized Povidone (which goes by numerous other names too) makes me tired, increases pain, muscle spasms, need to nap, and can affect my mood. Daily med NIH website lists medications and manufacturers where you can see what the inactive ingredients are, and there are pharmacies that will compound your medication, making it out of just the pure active ingredient. Unfortunately my insurance doesn’t cover that. I hope this can give you some help.
Ann
05/29/2022 (8:23 pm)
I am a post Lyme person. It has been 4 yrs. I get what one would term flare-ups. It has happened over 14 times in last 3 years. It hits literally like lightning. I get totally debilitated. Not exaggerating. I run. Fever of about 101-102 rapid heartbeat. But the worse is the total body and muscle pain and can barely walk. I have to get in bed with lots of blankets, take things like DayQuil, ibuprofens. It usually takes about 20 hrs for fever to break and once that sweating begins the severe fatigue and muscle weakness goes away almost as soon as hits. Literally, I can be fine and then the next minute I can’t move. Any thoughts
Ann
05/29/2022 (8:25 pm)
Also severe chills and shaking. Can’t hold a cup.
Dr. Daniel Cameron
05/30/2022 (8:50 pm)
I advise my patients to make sure there is no other cause do the fever. I also look a second time at Babesia as it can cause sweats and does respond to doxycycline.
Charlie
06/03/2022 (6:36 pm)
I contracted Lyme’s Disease 5 yrs ago. I was treated with antibiotics for several months and eventually was better. However, every late spring, I have a flare up which mainly consists of extreme fatigue. I weather through it with antibiotics but it takes a month. I was under the false impression that once you contracted it, you have it for life only that it becomes dormant. My Dr. recently advised that that is not the case. That said, I still get wacked every year in late May-Early June.
Dr. Daniel Cameron
06/04/2022 (4:47 pm)
Some doctors are willing to treat only if they assume it is a new infection. I have seen new infections and recurrences in my practice.
Don Robertson
06/12/2022 (2:32 pm)
I have the same problem with pain Cathy and for years was able to live a fairly normal life because my doctor was allowed to prescribe pain medication at that time. And then she wasn’t due to the senseless war on opioids. Now I spend most of my time just barely surviving rather than living.
Lyme disease makes everything worse. It amplifies the pain I experience from injuries and accidents in childhood.
I am a 75 year old veteran who can’t get anything stronger than ibuprofen! I do not see how doctors who refuse to give us the help we need can’t sleep at night
I hope things can improve for you soon Kathy.(e-mail me if you like)
don
Dr. Daniel Cameron
06/13/2022 (2:45 pm)
I also hope things improve.
Michelle
12/11/2022 (7:49 pm)
I have an eeg and emg next week at neuro, I had lyme in 2012 and after 6 months of hearing it was anxiety I found a lyme doctor. I was treated w Zithromax for 4 weeks and bactrim and Zithromax for two weeks… I ended w c diff and did cowden natural protocol for 8 months. All symptoms went away. I felt 100 percent for 10 years now, it’s all back.
Camille
12/12/2022 (1:03 pm)
Hi,
Thank you for your information!! I think I have Lyme reactivation and fearful to start Doxycycline as i also got C. Diff
What is the Cowden protocal?
Camille
Donarae Newman
07/19/2023 (7:26 pm)
try cbd gummies with either melatonin or CBG and you will sleep
Danny
02/25/2022 (3:59 am)
I had Covid recently and it was awful. 3 weeks not getting better before using ivermectin and getting better rapidly thereafter. However I am far from getting back to normal. My Lyme symptoms have multiplied by 100. I was in the ER tonight Bc my shortness of breath was so bad I couldn’t hardly breathe. After several tests I was told I’m perfectly fine and it’s anxiety. I’m still awake and can’t sleep short of breath wondering if I will ever bounce back. I pray anyone reading this finds the inner strength to cope and continue to fight as I have. The real me and you is in there somewhere yet and every once in a while it’s revealed to us by a good hour or day which should be enough to find the will to live on… may God bless you with courage.
Vanessa
03/05/2022 (9:19 pm)
Night routine
I’m taking CBD
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
Amanda
04/04/2022 (12:55 pm)
Danny, I hope you are better. I needed to read this. I’ve been in remission since 2019 and was just hit with a huge flare up out of nowhere. I had Covid in February and also April of last year. I’m not sure if that’s what has brought this on, but I’m alone of pretty down.
Dee
09/08/2022 (8:35 pm)
I’m honestly so grateful to have found this group. I’m dealing with my first flare, and it’s awful. I had a few months of a symptom free, “normal” life and the last 2 weeks have been rough. I always say I don’t wish this on anyone! Prayers for all🙏🏼
Eduardo Rodriguez
04/26/2022 (12:52 pm)
Thank u I really needed to hear this. Im not the only one that feels lost and not himself with ghis stupid lymes disease thank i
Diane
06/01/2022 (12:20 pm)
I will say a prayer for you Danny! I have a long list of family members I pray for God to heal them as well! Hang in there!🥰🙏🙏🙏🙏🙏👍
Jessica Atkisson
02/03/2022 (12:11 am)
I am a 34 year old woman, diagnosed with Lyme at the age of 10. I am currently having the biggest flare up after having Covid-19 about a month ago. Anyone else relate to this? What can I do to help ease the pain as I cannot take anymore Tylenol or Motrin. My body aches, my knees are swollen and headaches every morning and afternoon. I have had sever irritability as well. My concentration has gone down the drain. I hope it returns soon so I can continue with my schoolwork and career.
Dr. Daniel Cameron
02/05/2022 (10:24 am)
I have had patients with a history of Lyme disease who have flared up after contracting COVID-19. Both Lyme disease and COVID-19 can lead to an overactive immune system. I have found it difficult to treat the pain of Lyme disease without treating the Lyme disease. I suspect it is difficult to treat Post-COVID pain unless it is from Lyme disease.
Gina
03/04/2022 (9:57 am)
I was diagnosed with Rocky Mt Tick fever 8 years ago. I was a runner before that. I can’t exercise or even walk 1/4 without problems. I get so weak I have to lay around for 2-3 days. Can’t hardly lift arms off bed. Feel like I could pass put but never do. Weak and foggy mind. This has happened off and on for past 8 years. I had covid, September 2021. I call these spells crashing because it feels like my body just shuts down. How many years will these relapses continue. If that is even what’s going on? Is Doxy the main way to treat relapse?
Rebecca
05/27/2022 (9:26 pm)
Love your testimony and your love for Jesus. I am so sorry for your troubles though wish I could help you. Quick meaningful prayer for you the feel better.
Lord Jesus please lift up Lisa and help find a way to manage these troubles.
I knew a 90 + year old and she had arthritic pain said she prayed to Holy Spirit and He helped her with her pain.
He is our helper. Lol
Michelle
12/11/2022 (7:51 pm)
Amen
Mabel Barragan Svagna
11/26/2022 (7:41 pm)
That’s how I feel; like I’m going to pass out and just can’t walk anymore. I feel so terrible . I’m really desperate. I’m on antibiotics niw did the last 2 weeks and I feel worse. This really is hell
courtney
04/16/2022 (1:38 pm)
Dr. Cameron, the truth is that 80% of people with Lyme disease have immune SUPPRESSION rather than the “overactive immune system” response, which only accounts for 20% of people who have Lyme.
Marisa Brady
09/16/2022 (7:26 am)
I just had Covid 4 weeks ago and my pain is all back and swelling. Any advice 🙁
Dr. Daniel Cameron
09/16/2022 (8:44 am)
I advise my patients to be evaluated to determine if it is a delayed recovery from COVID-19, another illness, or Lyme disease.
Marisa
03/09/2023 (9:55 pm)
Thank you. Here I am still in the same boat. Knees huge legs kill me. Joints toooo I was told to take doxycycline and Ldn
Vanessa ribeiro
03/05/2022 (9:20 pm)
Night routine
I’m taking CBD for PAIN
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
Fengli Lan
11/01/2021 (6:56 pm)
Chinese herbal medicine, acupuncture, homeopathy may help!!! Search in your area and find a Licensed acupuncturist, who understands Lyme disease, to help you!!!
Joseph Bitetto
02/26/2022 (3:33 pm)
I received a bite on my thigh that was the classic bullseye look. This was in 1997, my doctor at the time said it was a spider bite. Six years later I woke up with bels palsy on the left side of my face. Was treated with antibiotics, ever since a few times a year I get a Metallic taste in my mouth, extreme fatigue high heart rate and shortness of breath.
Amanda
04/04/2022 (12:56 pm)
Danny, I hope you are better. I needed to read this. I’ve been in remission since 2019 and was just hit with a huge flare up out of nowhere. I had Covid in February and also April of last year. I’m not sure if that’s what has brought this on, but I’m alone of pretty down.
Kay
04/03/2022 (4:09 pm)
I went to see an acupuncturist who does NAET treatments. It has been amazing to see how she can identify something I exposed myself to in the previous two weeks, without her knowledge, and went downhill. She would then do a treatment on the items causing problems. I had to go see her a couple of times a week to be able to get up and go to work at all when I was really bad off. I have used some Chinese herbal medicines too.
Rachel Sloa
10/22/2021 (5:54 pm)
Since 2007 I was diagnosed with Lyme Disease, I’ve had Chronic late stage Lyme for 15 plus years, dealing with daily pain and problems arising all the time. Then in 2016 in Broome County NY I was diagnosed with Western Blot Lyme disease following a tick found on me. Now having problems getting any help from infectious disease dr. What can I do? I recently been taken on doxycycline 100mg that I’ve been on for past 15 years for my Lyme disease. Now I’m lost and don’t know what else to do.
Rachel
12/29/2021 (6:16 pm)
I had to go to PA for my Lyme disease because no one in Broome county would treat me or believe I had Lyme disease. I went undiagnosed for 6 years. Find a dr that specifically specializes in lyme and not just infectious diseases.
Cee
01/12/2022 (9:35 am)
Do you mind telling me who the doctor was in PA? My sister-in-law has been in bed for two weeks with a flare-up and desperately needs a doctor to help her. She’s had chronic Lymes for eight years. Now her whole left side is numb and in pain. The ER is only addressing Covid cases. Thanks
Sherry
01/21/2022 (12:29 pm)
I also would love the name of the doctor in PA.my 7 year old granddaughter is dealing with it constantly.
Ann marie Slattery
01/29/2022 (3:10 pm)
Dr Horowitz in my
Elisa
08/06/2022 (9:20 am)
Hi Kay
I just want to second the use of NAET. It seems totally nuts but I was treated for diagnosed celiac disease that no longer shows up in tests. It’s nuts. My son was treated for gluten intolerance and autism meltdowns and is a totally different kid for the last 5 years. It can’t hurt, it can only help. If you have hard to treat symptoms, it’s worth a try.
Annie
01/29/2022 (3:09 pm)
Dr.Richard Horowitz Hudson valley NY 30 yrs of treatments over 17000 patients I’m suffering for 30 yrs and his research and treatment seems the best on my research or sign up for Lyme clinic at one of your local hospitals they usually have one in your state. Good luck and god bless you tube is a wealth of information on Lyme and coinfections that go along with it listen to Horowitz videos