5 things to know about Lyme carditis

Although most people associate Lyme disease with fatigue, joint and muscle pain, fevers and other flu-like symptoms, the illness can also cause serious, debilitating and sometimes, life-threatening symptoms that impact the brain, the lungs and even the heart. The authors of a recent case series, describe "5 things to know about Lyme carditis" to help prevent unnecessary implantation of pacemakers.

Lyme carditis occurs when Lyme spirochete enter the tissues of the heart, causing blockage. Symptoms, which may include lightheadedness, fainting, shortness of breath, heart palpitations, or chest pain, can begin as early as one week after a tick bite. A high-degree atrioventricular block can lead to the need for a permanent pacemaker or in some cases, death.

In the American Journal of Cardiology, Wan, from Queen’s University in Ontario, Canada, lists “5 things to know about Lyme carditis and atrioventricular block.” [1] Having an awareness of these, Wan says, may help prevent pacemakers from unnecessarily being implanted in patients with heart problems caused by Lyme disease.

Lyme carditis occurs when Borrelia burgdorferi, the agent causing Lyme disease, infiltrates the heart tissue.

The listing follows an article published earlier by Wan and colleagues in which they describe five cases of Lyme carditis with high-degree atrioventricular block. The patients were all admitted to Kingston General Hospital in Ontario, Canada. [2]

“5 things to know about Lyme carditis”

  1. Lyme carditis can be an early manifestation of Lyme disease.
  2. Lyme carditis should be considered when younger patients present with severe conduction abnormalities.
  3. Atrial ventricular block in Lyme carditis can progress rapidly and be fatal.
  4. Early treatment with antibiotics may prevent irreversible conduction disease in Lyme carditis.
  5. Before considering implantation of a permanent pacemaker, clinicians should wait for a response to antibiotic treatment for atrioventricular block requiring temporary pacing.

If these points had been considered by the clinicians, 2 of the 5 patients with Lyme carditis may have avoided having a temporary pacemaker implanted. “Temporary pacing was indicated according to hemodynamic tolerance to bradycardias,” explains Wan. [2] Fortunately, none of the patients required a permanent pacemaker.

In addition, treatment delays may have been avoided for 3 of the 5 patients. “The majority of patients (3 out of 5) visited the emergency room multiple times before they were correctly diagnosed,” Wan explains. “Two patients were diagnosed on their second visit. One was recognized on their fourth visit.” [2] [bctt tweet=”5 things clinicians should know about Lyme carditis.” username=”DrDanielCameron”]

Treatment delays may have been avoided if the doctors had made a clinical diagnosis of Lyme carditis in the absence of a tick bite or rash. Only 3 patients remembered a tick bite, and only 1 out of the 5 had an erythema migrans (EM) rash.

All of the patients presented with classic symptoms of Lyme disease including fatigue, fever, headache, neck stiffness, flu-like symptoms, nausea, arthralgia, and/or myalgia.

Clinicians treating children should also be aware of these key points, as 2 of the 5 Lyme carditis cases reviewed by Wan and colleagues involved a 14-year-old and 19-year-old adolescent.

 

Related Articles:

Another cardiac manifestation of Lyme myocarditis

When Lyme disease mimics a heart attack

Lyme carditis causes complete heart block in 26-year-old man

 

References:

  1. Wan D, Baranchuk A. Lyme carditis and atrioventricular block. Cmaj. 2018;190(20):E622.
  2. Wan D, Blakely C, Branscombe P, Suarez-Fuster L, Glover B, Baranchuk A. Lyme Carditis and High-Degree Atrioventricular Block. Am J Cardiol. 2018.

30 Replies to "5 things to know about Lyme carditis"

  • Matt
    07/09/2021 (9:43 pm)
    Reply

    I was diagnosed with Lyme when I was 21 and it was because of the heart palpitations and shortness of breath that made me go to the doctor. I actually lived with the heart beating weird for a month or two before I went but it got so bad I was afraid I’d die in my sleep. I ended up going to the doctor. 4 weeks of antibiotics and it stopped… Kind of. The doctor told me if I have the palpitations to kneel and bear down to help “reset” my situation. For the most part it worked or would pass. Fast forward and I’m 34 now and Every now and again if I flinch to move fast (not every time) it will set off my heart into palpitations (like once every 2 months for 15-20 min or so). Has been happening since I got LD and never before I was diagnosed. Can it effect your heart long term and should I be worried?

    • Dr. Daniel Cameron
      07/10/2021 (12:36 pm)
      Reply

      Lyme cardiologist is typically an early finding in Lyme disease. I have often sent my patients who have been ill for months or years to cardiologist while I address their tick-borne illness but have not seen long term heart disease from tick-borne illnesses. Other physicians may have seen cardiac damage due to a tick-borne illness.

  • Tabitha Rohr
    02/28/2021 (10:22 am)
    Reply

    Hi!! My name is Tabitha , and I live in West Virginia. In October, I was misdiagnosed for flu, took the entire script of Tamiflu before going to the ER to be diagnosed with not only Lyme disease, but Rocky Spotted Mountain Fever. Pounding headaches, lymph nodes around neck hurt , low grade fevers.. just finished my third Doxycycline 26 day antibiotic a week ago. This past couple of weeks , my heart is beating and fluttering like crazy. Doctor says say stress and relaxation techniques, and put me on cymbalta and abilify. I can barely write I have brain fog so bad. Please, any advice or suggestions are so greatly appreciated. I’m close to Morgantown, WV ..but not finding much for infectious diseases doctor. I have 4 kids that need their mom back…Please help. Thanks in advance

    • Dr. Daniel Cameron
      03/01/2021 (8:25 am)
      Reply

      I have some patients who have been successfully treated for a tick borne illness by changing up treatment with a different oral medication. In some cases, IV ceftriaxone had helped. I work with a neurologist and cardiologist at the same time in case there is an underlying illness.

    • Michelle K Towle
      09/10/2021 (2:22 pm)
      Reply

      Can a pulmonary doctor diagnose lyme carditis?

  • Natalie
    08/16/2020 (11:49 am)
    Reply

    I am 23 years old and about a month and a half ago I developed what I thought was the flu. It was the strangest flu I’ve ever had. I remember having awful pains in my neck, of course I assumed this was just a side effect of my low grade fever. Another thing that stood out to me was this constant pounding headache I had to which nothing relieved the pain. I layed in bed barely able to move and finally after 7 days of torment I went to see my PCP…I was tested for coronavirus and got a negative results, but I was still told it was coronavirus (coming to you from 2020), I was told to go home and quaratine for 2 weeks by my doctor. He did not order a single blood test, urine sample, nothing. I popped Tylenol pills like they were candy to try and releave my symptoms. Days later I felt a little better, I was still pretty tired most days but I did my best to return to work. On day 2 of being back at work after being out sick for 7 days, I noticed I was struggling to breathe and walk. Every step it seemed like I was running a marathon. I had to stop frequently to catch my breath and I was having some chest pains. I called my doctor to let them know that I was still not feeling better and that my fever had gone away but then had actually returned. I told my dad I had an 100 degree fever again, he laughed at me and thought I was being dramatic, so I thought nothing of it. I got scheduled for an appointment but they called me a few hours later and cancled the appointment because they wanted to test me again for the coronavirus, AGAIN. While in the hospital, they ran and EKG test on me since I was experiencing chest pain. I was told I had a condtion called “winky heart”, or second degree phase 1 heart block. No one even thought to run a lymes test even though I told the doctors about my strange symptoms (constant headache, neck stiffness, returning fever) I was sent home with an urgent referral to cardiology. The next day, I could barely walk, and I mean BARELY. I went shopping with my cousins and I wish I had the words to describe the feeling. Every step was agonizing pain, I couldn’t breathe, my legs did not want to move when I told them to move, but I tried so hard to hide this from my cousins as I only get to see them once a year. Eventually my family caught wind of what was going on and they urged me to return to the ER that day of the shopping trip. I was panicking, I thought I was dying. I arrived to the ER and lied down while the montior watched my heart. My rate was hanging out in the 40s and when I stood up to go to the bathroom I nearly fainted. I guess 3rd time is a charm because a doctor finally reccomend a Lymes disease test. It was such a shame that it took 3 doctors to finally put the pieces together. I was rushed to another local hospital by amublance to be treated in the center for advanced medicine where they had an amazing cardiology department. When I first arrived, I passed out several times from my heart rate plummeting into the 20s. I received shots of adrenaline to restart my heart, I was in so much agonizing pain that I turned to my father and my nurse and said “I just want to die, let me die”, and I meant it. The pain was unlike anything you could experience. I could not move my body and I could do nothing more than lay in the bed lifeless while doctors came in to run test after test.. After 2 days in the hospital with some IV antibiotics, I was being told I was positive for Lymes disease but should be able to return home the next day with some oral antibitoics. They allowed me to eat and they made an order for me to be able to take a shower that morning as well since I was not able to get up previously. I’m not sure what exsactly happened next, but within 5 seconds there were 20 doctors in my room, calling my name, shaking me, stabbing me with adrenaline and yelling orders to each other. My heart had stopped out of no where. I remember feeling very tired suddenly and that was it. They called my mom who was already on her way to see me, she arrived sobbing with tears, my whole family was so scared for me. I was taken into immediate surgery and given a temporary pacemaker to keep my heart beating. It was a small wire that was threaded into my body via a vein that led to the heart with an external battery. My heart was in a complete block and could not beat on its own. I was terrified, scared, and not sure what the future held for me. I was diagnosed with Lyme Carditis, a rare form of Lymes Disease that attacks the heart. After 7 days of antibiotics I was released from the hospital. It is only a little over a month since I was released, I struggle with extreme fatigue and dizziness, and recently I have been noticing that I am very confused and focusing way to hard on easy tasks. I’ve seen my cardiologists and the block has returned and I’ll need further testing and treatment. And all of this….because 1 doctor thought I had the coronavirus. If our doctors were more educated on this terrifying disease, I would have avoided the hospital and not almost lost my life. Today I am very grateful for the men and women who saved my life. My cardiologist and doctor team called me a miracle, I was the youngest case of Lyme Carditis they had ever seen, I got really annoyed hearing the doctors make comments about my age and how I was too young to be in cardiology. I still get weird looks from all the elderly folks when they see me in the waiting room. But as it turns out, no age is safe from this disease, and no age is invincible from any type of death sentence. I am lucky to be alive, I know the road ahead will be hard but I made it out with my life, something that I have always taken for granted. And the scariest part of this entire story?? I NEVER found a tick, a bullseye rash, or any indication that I had ever been bitten by a tick. With all the craze of the coronavirus, I was shoved aside and told to quaratine, a reccomendation that almost killed me.

    • Dr. Daniel Cameron
      08/17/2020 (8:03 am)
      Reply

      Thank for sharing your story. I thought you detailed note and how you felt helpful.

      • Vicky Swanson-Starke
        09/14/2020 (8:52 pm)
        Reply

        Omg…I had a tick embedded in my right arm May 2nd 2020. I went to urgent care to have it removed. I have diabetes II so for my checkup I asked they do a routine test for tbe tick bite. The nurse said it was included, the dr said it was not. On the visit I went into a fib. I had a rough nite the nite before my routine tests. At the dr visit i had to have an ekg and was put on 2 new medicines..blood thinner and toporol?. Since then Ive been out of breath, fatigued, body aches. Ive never had a temp but I have sweated at work immensely. I see the dr in the morning..( oh he set me up with a cardio doc)Im going to demand the lymes disease test. Something is wrong!

        • Dr. Daniel Cameron
          09/15/2020 (7:43 am)
          Reply

          I have patients with both cardiac and Lyme disease issues. I encourage my patients to see a cardiologist and a doctor with experience treating Lyme disease. Call my office at 914 66 4665 if you have any questions.

      • Joni
        08/11/2022 (10:04 am)
        Reply

        Do people that have late stage Lyme and cos get carditis or is that just in early
        Stage lyme?

        • Dr. Daniel Cameron
          08/12/2022 (7:23 am)
          Reply

          I have often seen symptoms including chest pressure and palpitations in my chronically ill patients. Many of them are evaluated by cardiologists. Their tests are typically negative. The Lyme disease carditis cases I write about typically occur in the first week of illness.

    • Donna DiDario
      09/24/2022 (8:06 pm)
      Reply

      Hi Natalie,
      After reading your story, I was stunned. The same exact thing happened to me. Misdiagnosed with lingering Covid, 3rd degree heart block. How are you feeling now?

  • Katlynn Hartzell
    07/10/2020 (1:21 pm)
    Reply

    Hello!

    I am a 28 year old female. I was misdiagnosed for what we assume was about 13 years. Was diagnosed
    10 years ago. I did treatment for 2 years and felt well enough to stop. I’m 8 years post treatment and today was diagnosed with pericarditis and AV heart block. More tests to come for a suspected hole in my heart. I’ve been having stabbing pains in my chest since I was 12 and just 4 days ago I had about 30 episodes of stabbing pains to the chest within 4 hours and one event of very high heart rate that felt like my heart would burst. It lasted about 4 seconds and then began to drop back down to somewhat normal. I’m wondering if I could be dealing with a Lyme relapse and Lyme carditis. Just wondering your thoughts?

    • Dr. Daniel Cameron
      07/11/2020 (7:43 am)
      Reply

      I have patients in my practice with cardiac issues where the cause is unclear. I first rely on the cardiologist as you have done. I have seen patients where their cardiac issues seem to be exacerbated by Lyme disease.

  • Trevor
    07/02/2020 (2:02 am)
    Reply

    I had lyme disease when I was 17 and didnt tell anyone when I lived in northern va. My body had the symptoms for a week and then it just went away without antibiotics. Now I’m 33, in the navy, and I have had some ekgs, ultrasound done saying I have left ventricular hypertrophy. Is it possible that the lvh is from my lyme 16 yrs ago?

    • Dr. Daniel Cameron
      07/02/2020 (6:48 am)
      Reply

      There are so many causes of Left Ventricular Hypertrophy. I have not seen LVH in my patients.

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