Daniel Cameron, MD, MPH

What does a Lyme flare-up feel like

What does a Lyme flare-up feel like? Ask the Lyme Doc.

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by

Dr. Daniel Cameron
in

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

 

Comments

233 responses to “What does a Lyme flare-up feel like? Ask the Lyme Doc.”

  1. Ryan Avatar
    Ryan

    I had a really bad case of limes disease in 2019. Undiagnosed for six months. I felt terrible. Finally, a doctor prescribed me cefuroxime. After a couple of months, I began to feel better thank God! I got about 80 to 90% better in four months. Then I read this study from Johns Hopkins university on which herbs killed lymes bacteria in test tubes.
    https://rawlsmd.com/health-articles/real-talk-new-johns-hopkins-study-7-herbs-can-kill-lyme-bacteria
    I went on Amazon and found a supplement with many of those herbs. I have been on that for the last couple of years off and on and most of the time I would say I’m about 90% better. Hang in there! It has worked for me.

    Reply
    1. Ali Avatar
      Ali

      Could you share what you are using from Amazon? Thank you

      Reply
      1. Lori Beardmorr Avatar
        Lori Beardmorr

        I don’t know how to get a reply back to this but where what herb did you find on Amazon

        Reply
        1. Annika Moniker Avatar
          Annika Moniker

          I googled the herbs listed as most effective in the linked article and it came up with Tick Immune Support 120 capsule supplement by Zenmen. Not sure if that’s the one OP was referring to but it has the herbs in it and reviewers seemed to find it effective

          Reply
  2. Suzanne Avatar
    Suzanne

    How are the signs and symptoms of FM/CFS delineated from signs and symptoms of Lyme Disease (and/or co-infection)?
    What treatment protocol treats both?
    I see someone’s repeated posting of their regimen… What does the celery juice do to help? What does CBD do to help? Do they cure or do they mask?

    Reply
    1. Dr. Daniel Cameron Avatar
      Dr. Daniel Cameron

      The signs and symptoms are similar. I like to include antibiotics if Lyme disease is a consideration. I have some patients who appear to benefit from CBD. I do not know enough about celery juice to help you.

      Reply
    2. Lee Avatar
      Lee

      Writing this out of desperation. I literally feel like I’m dying without a hint of exaggeration. Lyme is killing me. I truly feel like my body is giving up. I can’t do this anymore more. I have no quality of life. I just live in pain and barely have the energy to shower. My face keeps blowing up because suddenly I’ve become allergic to everything, I have to lean on something to stand, my memory is completely shot. I can’t even write anymore because it hurts. My fingers hurt and my head is spinning from migraine and dizziness. Can anyone offer any advice please?!!!

      Reply
      1. Dr. Daniel Cameron Avatar
        Dr. Daniel Cameron

        I have patients in my practice with fasciculations due to Lyme disease. You may not even find the cause of fasciculations. I advise my patients to include a doctor familiar with chronic manifestations of Lyme disease. I also encourage my patients to seek second opinion if you they remain ill

        Reply
      2. Mabel Barragan Svagna Avatar
        Mabel Barragan Svagna

        That’s exactly where I am now. Just started the antibiotic for Lyme 5 days ago and I actually feel worse. I’m so desperate

        Reply
      3. Kayla Gibbs Avatar
        Kayla Gibbs

        This is the same with me!! I Just got tested for Lymes.. Now The Wait For A Couple Days For Results…Good Luck I Hope You Get Answers.

        Reply
  3. Steph Avatar
    Steph

    I HAVE THIS BULLEYE RASH ON MY INNER THIGH AND MY LEFT EYE SWELLS UP LIKE A STY IN IT AND RASH SPOTS MY DR JUST PRESCRIBED DOXYCYCLINE TWICE A DAY TOOK LABS FOR LYME AND LUPUS MY NECK HURTS NAUSEOUS BODY OS KILLING ME FATIGUE I BROKE OUT WITH THIS RASH THREE TIMES NOW SINCE FEB IT IT HES ITS PAIN FULL PLEASE HELP I CAN SEND U PICTURE OF THE RASH

    Reply
    1. Nicole Avatar
      Nicole

      I’m hoping this will help my fellow lyme community. In 2018 I came down with many multi-systemic symptoms. At first it was just mental and muscular fatigue, which then turned into various paroxysmal symptoms from head to toe, all episodic like pains or sensations- stabbing/shooting pains in limbs, head, and face, muscle spasms, bladder issues (sudden urges to urinate multiple times in one night), tinnitus (constant ringing of the ear), sudden anxiety triggered by light, eating, & certain sounds, paresthesia- tingling sensations in face & limbs, myoclonic limb jerks, severe brain fog, insomnia, joint pain in shoulders, hips, & knees, joint stiffness in the morning, 3 nights in a row at bed I felt weird radiating sensation moving from the back of my neck into my head, night sweats, and finally I had two episodes that sent me to the ER- the first was for a severe sharp sudden pain in the left side of my head that ran down my face and almost fainted, which thereafter I developed photophobia especially in my left eye, the second time I woke up with pain in my left lower back, thought it was another muscle spasm, then suddenly had a strong urge to urinate, when I began to pee my blood pressure dropped and broke out into cold sweats and I called out for my boyfriend who found me on the bathroom floor. After seeing 6 different types of doctors, and running all sorts of tests, including an infectious disease specialist which ran a standard lyme test (surprise surprise it came back negative) who then suggested I might just be “stressed out” and offered me anxiety meds. For a while I had no answers. Eventually I started a plant based diet, essentially went vegan, incorporated green juicing/smoothies, and anti-inflammation herbal supplements. Within 3 weeks my episodes began to dissipate. I started to feel normal again. Fast forward to July 2020, after seeing a gynecologist who asked about my medical history and suggested I see a lyme specialist to get tested, low and behold with the specialist who ran comprehensive lyme test, there it was, the bands were faint but it was a positive lyme test. I also tested positive for bartonella. Unfortunately, lyme is very hard to treat after being undiagnosed for so long. I was on 3 different kinds of antibiotics, plus intravenous antibiotics twice weekly for 6 months and every month I still had a positive lyme test. I decided this was no longer healthy for my body and began Dr Rawls Herbal Protocol- Vital Plan. Highly recommend the Brain Support for any cognitive issues. There are many people out there who have beat lyme via natural alternatives along with a healthy diet and lifestyle. My biggest triggers were always mental & physical stress. So I’m very mindful of what I put into my body- food & supplements, regulating my stress levels, & staying active- even if it’s just going for walks. What inspired me to take this approach to treat my lyme was reading about other people’s success stories. So I hope my story inspires and helps someone else out there.

      Reply
      1. Nicole Avatar
        Nicole

        Forgot to mention I also incorporated a high quality of CBD to my daytime and night time routine. It helped a lot.

        Reply
        1. Clare Avatar
          Clare

          Hi Nicole,
          Thank you for your write up. There are so many similarities here that I too experienced with Lyme & a co-infection. I saw a Lyme specialist as I was getting nowhere with my GP who inferred without actually saying that I was psychosomatic. This is following entering the GP room with a bulls eye rash to my arm & leg & being treated with antibiotics. She thought I was cured but no I wasn’t. My body grew very weak & I experienced neurological symptoms of labyrinthitis, brain fog, sensory processing delays, nerve pain in my jaw & over sensitivity in my teeth. Intermittent facial paralysis. Joint pain & muscle weakness throughout my body. Fatigue & anxiety. Became breathless on minimal exertion. Unexplained Infertility & loss of my menstrual cycle. Dysbiosis of my gut leading to various food intolerances & bloating. Which I was investigated for ovarian cancer. Whatever tests I had they always came back negative as did the Blot Test. I had visual disturbances & initially had a few minor car incidents. On one occasion after a shift at work I blacked out at my wheel & I’m lucky to be writing this now. My GP still didn’t take me seriously.
          It was a Lyme specialist that said I had chronic Lyme & sent details to my GP to take a blood test to send it to her clinic. She said she would do this free for me (as I was a private patient) My GP wouldn’t send a sample over & took another standard NHS test. Which again was negative. I’d had enough by now & like yourself sought complementary medicine and advice. Felt scary as it would cause ‘die off ‘ which isn’t pleasant at all. I did though & yes it was like going cold turkey. Lots of hydration needed to flush out the toxins. However one morning I woke as usual & arrived in my kitchen for breakfast & it felt like a light had been switched on. I knew instantaneously my symptoms had gone. Literally overnight. So after having debilitating health for four years I was free of it all. So I applaud you for writing to inform other sufferers that there is an alternative way to managing this awful disease that invades our systems & causes such havoc & harm. Anyone who has experienced Lyme is a trouper as this disease is soul destroying when you can’t find the right remedy to fight it or be taken seriously about the diverse multi systemic changes that occur within your body. Wish you continued good health Xx

          Reply
          1. Stacey Avatar
            Stacey

            went through all of this for 20 years until, via social media I started to inquire, went to a lab in Germany, learned about it all (and the politics of lymes and coinfections), returned to find a private dr on the east coast and now a dr in Florida. Lost most of the 30’s and 40’s to all of which you describe above (and being told by the major drs I had fibromayalsia, stiff mans disease, sleeping legs, arthritis,….blah..blah..and finally just that I was depressed and making things up. In the meantime, I didn’t have a family, no one believed me, and I quit several jobs or worked only part time given all of these symptoms. But I made it, had many adventures in life, and I now know health is more important than wealth! Like everyone is saying here, some medicine is sometimes needed but there will never be a cure all after so many years so diet, exercise, herbs, and that one MD who actually understands and cares make everything better! 🙂

      2. Sharon Avatar
        Sharon

        OMG it’s like you literally climbed inside my brain and body and described everything I’m going through right now !!! I contracted lymes several years ago and I was at the ER with 106° fever etc, took me 6 weeks of Doxy to get it under control and I have several flare-ups a year..

        Reply
      3. Nichol Avatar
        Nichol

        Sad that so many of us have similar stories. I second a lot of what Nicole said. I had undiagnosed Lyme for about 10 years. Joint pain, headaches, stomach issues, nerve pain, fatigue, brain fog, muscle pain, etc. I was treated 13 years ago and had a few really good years until I was exposed to mold at my work. Since then, it has been more difficult to stay in a good place. I also have Hashimoto’s thyroiditis which was worsened by the Lyme and mold. And recently I had Covid, which seems to have complicated things more. But I too dropped meat from my diet. And in recent years I had to drop dairy. I still eat eggs. But after an elimination diet found dairy, soy, and corn didn’t work for me. So that keeps me free of most processed foods. As long as I stay away from those foods I have less flare ups. I also workout, even if it is just walking. I take 50,000 iu vitamin D weekly, turmeric, iron, coq10, magnesium. And I use a powder called ProGI Soothe. Lastly I had to give up alcohol. Find a Lyme knowledgeable doctor. Then find a diet and workout plan that works for you. Be willing to try different things and know it may take time to find the right balance. I’ve found little differences can make a big difference, for example, my doc told me to take melatonin to sleep, but the gummies were like caffeine to me. She then suggested I try capsules instead of gummies and they worked well. Listen to your body. I wish you all luck and health.

        Reply
        1. Dr. Daniel Cameron Avatar
          Dr. Daniel Cameron

          I have patients in my practice who have has to be retreated with antibiotics

          Reply
          1. mary wentz Avatar
            mary wentz

            I have just experienced my first flare/possible full return
            I have no stress in my life (of course we all have some!!)
            I eat a diet I love and am proud of. It is very healthy. I know what to stay away from. I have a great and happy life. Why would I have a flare?

          2. Dr. Daniel Cameron Avatar
            Dr. Daniel Cameron

            I often have patients with a tick borne illness who flare up without any stress, dietary changes, or initiation of antibiotics. How frustrating.

        2. J Avatar
          J

          My Lyme ordeal started almost 9 years ago and I went through the same with some doctors just thinking it was psychological. I am a nurse and knew something wasn’t right, it’s sad that some doctors just didn’t take the time to figure it out. It was my family doctor that found that I had late Lyme, and it was not treated on time. It destroyed my autonomic nervous system which is what I think causes a lot of the same weird symptoms like the bladder issues that everyone seems to have experienced. I ended up with a pacemaker from the damage it did to my heart at 30. I am now working with Pfizer on the new Valor Lyme disease vaccine and all I can suggest is that people think about getting involved in the clinical trials for this vaccine as it is proving to be very promising. I truly hope this works because until you have Lyme, people don’t understand how debilitating it can be. I still have occasional flare ups which always seem to happen fall/winter out of no where. I was curious if anyone else tends to struggle around those seasons as well?

          Reply
          1. Kirsten Connolly Avatar
            Kirsten Connolly

            Hi I’m so sorry you’re going through this is as well. I was treated for “clinical” Lyme ten years ago. Based on my symptoms and igenex testing results my doctor put me on doxy and ceftin. I never really felt “myself” since this all began. But as of recently over the last three weeks I’ve been dealing with extreme fatigue, joint pain and muscle soreness. My PMD did the basic Lyme test which came back negative (shocker) but my Epstein barr titers are through the roof. My PMD thinks I have reactivated EBV. I have been going through A LOT of stress since July and my PMD thinks it cause a flare. On the other hand I feel like this is a flare from Lymes which I feel like I also get every fall/winter. It’s all so frustrating. I want to feel normal again

          2. Dr. Daniel Cameron Avatar
            Dr. Daniel Cameron

            I advise my patients to include a doctor with experience treating Lyme disease as part of their evaluation. I have patients who have relapsed, had a new infection, or had Babesia as the cause.

      4. Beryl Herrin Avatar
        Beryl Herrin

        Wow. Thank you, Nicole, for sharing your experience. I’m newly diagnosed and have many of the symptoms you mentioned. It’s very daunting and I hope I can get it to go away. I didn’t realize it can come and go – the “flares”. My anxiety over all of it is quite high and I feel like I’m in don’t hyper vigilant state. Glad to have found this site. Hoping you are well.

        Reply
  4. Susette Avatar
    Susette

    Does anyone start itching really bad with extreme exhaustion and brain fog with their Lyme flares? What helps the extreme itching? I’ve tried everything, nothing helps! Benadryl, itch creams, sprays Oatmeal baths, Aveno lotion, even prescription RX creams, I itch like crazy. Skins bloody and scabbed from itching. Don’t say don’t scratch! Impossible.

    Reply
    1. Yvonne Avatar
      Yvonne

      My doctor is treating the itching that accompanies my Lyme flares with a nutritional supplement that I take twice daily. It’s called Mirica, contains palmitoylethanalomide and luteoline and is manufactured by Young Nutraceuticals. Finally, I have relief from constant itching. Good luck!

      Reply
    2. Kay Avatar
      Kay

      Allergies increased significantly for me from Lyme/coinfections and can cause brain fog. A Dr recommended Alka Seltzer Gold (not Cold), which helps get a reaction under control. I have also been told that your heart rate increases 10 to 20 BPM if you are exposed to something you’re allergic to, but I wouldn’t be surprised if yours increased from the discomfort and irritation, but maybe you can find some answers looking at that. The Elisa act delayed lymphocyte allergy test, from Dr Jaffe is very helpful, although it’s expensive and You have to pay out of pocket upfront. My insurance did reimburse me once.

      Reply
      1. Sergino Avatar
        Sergino

        I am a cancer survivor, this is what happened to me when I found out I had cancer. Super itchy all over my body.

        Reply
    3. Mar Avatar
      Mar

      Do you happen to have digestive issues? SIBO with a Lyme infection is notorious for causing crazy itching …and always in the same areas like a pattern. Different people are affected with itching in different areas. If gut issues are a problem ….the die off and recreation of microbes send out toxins and some people itch. Just a thought.

      Reply
  5. Terrye Avatar
    Terrye

    Hi I have had burning feet ,sore thumbs ,left arm carpel tunnel symptoms that come and go,butt bones hurt when I sit ,lower back ache ,double vision in left eye ,corrected somewhat with prism in my glasses ,legs ache,knees ache ,low energy,brain fog ,tired , anxiety that’s bad when I wake up better at the end of the day, facicualations in my calf mussels,they want me to get a MRI of my back again ,said I had some stinosis in my back on the last one I had ,get a MRI of my pituitary gland numbers a little low ,had many blood test for Lyme and confections ,had some done through urine showed something but not enought for them to ever put me on antibiotics more than 10 days ,,tried vitamin B shot’s In my feet and a tins like unit did treatments to my feet ,it was a new treatment for neuropathy,did not do anything ,Been using benadryl 3 times a day and on Norco for the pain ,just tried the Benadryl for the last couple days ,it’s seems to helping my feet not sure why ,heard it’s not good to stay on it for it causes forget fullness and I don’t need that more memory problems,so we’re do I go from here ,tried several homapath things ,some days I can run up the stairs and some day I feed like 100 and I am 61 years old very active lift weights and take walks with my dog ,tell me it sucks trying to cure yourself when I have great insurance but none of them want to pay for Lyme treatment from a Lyme doctor and there’s nobody in southern Virginia that I can find to help any suggestions would help ,I keep hearing about a rife machine ?

    Reply
    1. Jenny Avatar
      Jenny

      You have basically just described the same way I’ve been feeling for the last two weeks. I’m in northern VA and had Lyme when I was 10 and then again in 2015. I did the antibiotics and was told I was cured. Since then I’ve had internal vibrations in my head and lower back that come and go. For the last 2 weeks, I’ve had some numbness in all for limbs and face, fasiculations all over my body, I can’t think straight or grip my pen. My left calf rolls into knots. Sometimes I can walk fine and sometimes I limp. I have a MRI and EMG scheduled for next week, but I’ve also made an appointment with Dr. Chu in Fairfax. He is not a traditional doctor but uses muscle kinesiology and natural supplements and diet to treat all sorts of ailments. I’ve never been to him, but at this point I’m desperate for the symptoms to go away and I’ll try anything to get my life back.

      Reply
      1. Dr. Daniel Cameron Avatar
        Dr. Daniel Cameron

        I have patients in my practice who have done well only to have unexplained symptoms similar to what you have described in my practice. Some of them have remained ill despite consultations with other physicians. I have found retreatment with antibiotics can be helpful for some of these patients.

        Reply
      2. Heather Reagan-Holihan Avatar
        Heather Reagan-Holihan

        Hey Jenny!
        I was wondering how things are working out for you.
        Has your non traditional dr helped?
        Thanks,
        Heather

        Reply
    2. Z. Avatar
      Z.

      1) Switching to a religiously strict Lyme-calibrated keto diet (bio, organic, raw cruciferous / green vegetables and only healthy fats and only 1 to 2 weekly servings of either bio meat or wild fatty fish, no dairy for me) plus intermittent fasting stopped all flareups for me in 36hrs. Note, I am keto-adapted, nubiens suffer ca. 2 weeks of “keto-flu”. This ketogenic protocol progressively slows inflammation; it stops feeding bacterial pathogen colonies with glucose; fasting causes autophagy, thus it improves cellular clean-up and turnover. Note: the nutrition protocol is not a treatment, it is for symptom management. 2) The brain fog and the neuropathy would not at least exacerbate. So further, I take standard neuro-supplements (vitamin B complex, vitamin D, omega fatty acids and coenzyme Q 10). Note: the supplements are not a treatment, but just neurological support and I my gut is now relatively health enough to absorb them. If ne has already has a leaky gut, longer and frequent fasting can repair the stomach lining and microbiotum as a necessary pre-step. 3) Functional detox: Lymphatic drainage self-massages (daily) help excrete toxins and increases blood flow; infrared saunas and heat saunas likewise help, plus heat harms bacterial colonies (note please, heat saunas are not allowed, if there are issues already with the heart, blood pressure and vascular health). Botanical detox: there are many articles for both Borellia- and Bortonella- fighting supplements and herb and can guide. Note, both functional and botanical protocols may trigger Herxheimer, I was not deterred nonetheless, as it gets better very soon. All 3 steps manage the symptoms, I apply them at the same time and as a lifestyle and they truly radically improved things for mе. However, as regards treatment, one absolutely must consult with a medical professional! Both Borellia and Bartonella and further tic-borne bacteria in the long run can damage the filter organs (liver, kidneys, etc.), damage the endocrine glands or make you resistant to your own hormones (insulin, thyroidal T3, cortisol, adrenaline, etc.) and so on and so on. That is why self-treatment even with herbal medicinal additives (i.e. not just detox but high doses herbal remedies and tinctures) is genuinely not safe, I do not advise it and I do not practice it. Finally, there is also a protocol for recovery and healing, including: 40mgHz sound vibration for cell regeneration, acupuncture and infrared acupressure, each / together reversing tissue / organ and metabolic damage.

      Reply
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