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]

5 things clinicians should know about Lyme carditis. Click To Tweet

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.

 

 


17 Replies to "5 things to know about 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.

  • 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.

  • Tunisia Fitch
    02/10/2020 (2:36 pm)
    Reply

    I’m 41, contracted lyme 20 years ago. However I went undiagnosed for the first 2 years. In those 2 years I felt like death would be the solution. I went to 4 PCP and they all but the last made me feel like it was in my head. I remember the day. Who I was with, what I was doing and where the tick bite was. The pain and other symptoms manifested themselves over time. I’m sitting in doctors for the 4th time 4 days. For heart palpitations and shortness of breath. Today I am demanding a titer. I’ve had 6 chest xrays and 1 MRI. No clots, and lungs are clear. I know what happening its getting my doctor to listen.
    If you live in Richmond. VA and deal with Lyme and have found a good Infectious disease doctor, please share.

    • Dr. Daniel Cameron
      02/10/2020 (6:35 pm)
      Reply

      You may want to consider another doctor if an infectious disease doctor is not available. Call my office in New York at 914 666 4665 if you have any questions.

  • Amanda Green
    08/16/2019 (1:12 am)
    Reply

    Same here lots of problems. Basically told it was in my head. Slowly local hospital is learning how to treat me but I am 39. I think after 10 years long term internal organ and brain damage has occurred. The hospital will never admit the dismissed my Lyme suspicions. I am just grateful they finally allowed me the antibiotic that works best for me. However after each “relapse” kinda like MS symptoms it is getting harder to bounce back. Each infection flare up requires more antibiotics and longer hospitalizations. My neurological condition is getting worse and I am getting weaker. I think some serious damage occurred 1.5 years ago. I ain’t dumb I know I am getting weaker. I just wish my family and Drs would be upfront with me.

    • Dr. Daniel Cameron
      08/16/2019 (10:47 pm)
      Reply

      Are there any treatment regimens they overlooked.

  • Eileen Donahugh
    08/12/2019 (6:06 pm)
    Reply

    Renatta, I live in West Dundee, Illinois and have been fighting this same battle for 10 years. I have yet to find a doctor to treat me. In this day and age most people would not believe your story or what many of us are dealing with. Unless one has lived it they will never know how difficult life can be with this horrible illness that doctors know nothing about. You’re in my prayers, keep me in yours.

  • Renata chapman
    06/27/2019 (4:31 am)
    Reply

    Oh My Gosh…Im in shock. After years of searching for answers for my daughter..1st diagnosed with Narcolepsy at age 8…and when things started drastically changing for her…more & more symptoms…no one knew what was wrong with her…2 of each Dr endocrinolgist, cardiologists, sleep specialists, pulmonologists, neurologists, neuropsychs, rheumatologists…++++ and Cleveland Clinic….= undiagnosed, its all in your head, no one would believe me..her….and then I found out in a medical report by accident the words munchenhauser by proxy…I cried for days, humiliated, mad and afraid to step foot in another Drs office because now this lie was on the records,,no one took us seriously..endless er visits, and Drs just saying take the 95%of you that is healthy and go to school…to my daughter,, A new internist listened and st appt said she most likely lacked serotonin and put her on Celexa and previously adderall..(which she could never tolerate well)…I waited about another 2 months and found a panda specialist..I was desperate..begging for help…my daughter was not functioning,lost weight…now 20 years old..She listened and ran tests galore…I also took my other daughter now 18 yrs old because she had such bad OCD and anxiety…and she ran tests…Today was result day………….LYMES…BOTH DAUGHTERS.. I had begged for years to have her tested…they wouldnt. and I,the mother (54) have had nonstop pain and swollen knees for 2 yrs…they say its just arthritis….along with a lot of Lymes symptoms…going to Drs tomorrow. and my husband passed away almost 10 yrs ago from an arrhythmia at 51. We lived backed into a forest preserve in Bartlett, Il My husban had lived there for 8 yrs prior to meeting him. He walked that path everyday..coming back with tics on his neck, clothes,,, He was a mech engineer..probably the smartest man alive but even he had no clue how dangerous this all was…I decided to share because I cant believe it, the news I received today…alll the years of advocating for my daughter, all the Drs laughed at me, made me feel like I was crazy…even the most painful insult that I was making my daughter sick,,,I had no idea what muchenhauser by Proxy was…until I read that report 1 yr ago…after reading these comments, the lives of others affected by this horrible disease….being misdiagnosed and getting no help. all the specialists we went to …knew nothing outside their box of specialty ..absolutely no knowledge, no training and a lack of interest …how to connect the dots..how to work with another Dr.. My daughter had 3 consecutive MRIs…because after they wouldnt run the lymes, other auto immune disease tests…I thought maybe its MS. I was all over the board….reading about neurotransmitters, every disease in the book that could possibly be disabling my daughter..She had chronic fatigue, tremors, pain and tingling in her legs, raynauds, misdiagnosed narcolepsy without cataplexy, NFLD(nonalcoholic fatty liver disease) add..unable to focus, finish a project, start a project, major problems with her jaw, teeth..had head gear at age 6, tonsil stones, missed periods, constipation, jus t in the last year she was dxd with overactive bladder, severe allergic reaction to sulfa drug(septra ds/bactrim)..both daughters, the sensation that water was running down her head internally, dizzy all the time, needed to eat several small meals, anxiety attacks, panic attacks, mood swings, pain in her body legs, head, headaches/migraines, chronic yeast…chronic candida, when she was young..I felt she had stopped growing, height, chubby, underdeveloped, within a years time she lost 17lbs not due to any meds at that time…She is now 20 yrs old, 5 foot, 99 lbs….She cant drive because she gets lost and has no focus…she is smart but cant retain what she read…must reread reread. crying overeacting, …plus so much more…Im so dissapointed in how Lymes Disease has not made its way into all Drs textbooks….I will be informing every single Dr we ever saw that laughed at us, made us feel we were making things up so that at least 1 more child, person doesnt go undiagnosed and suffers like my daughter did. This disease has to be taken seriously….My husband is gone from the arrhythemia…I have spent years searching begging…while not one of my daughters but both have Lymes and I put my swollen arthritic knees plus all the other symptoms on the backburner to help my daughter…and to find out all the prev Drs failed her…and our entire family had been suffering from the same disease. That is enough for physicians to be trained in Lymes Disease…it affected my entire family. I thank God for leading us in the right direction, Im grateful for an answer….Now, Im going to go pray ..to figure out what to do next. God Bless all of you.

    • Gail Quinn
      06/27/2020 (1:01 pm)
      Reply

      Renata, I am so sorry. I have also experienced severe effects from Lyme disease. What saved me was IV antibiotics (ceftriaxone) for 8 weeks. Look for an infectious disease doctor that specializes in Lyme disease. Come to NY if you have to. It’s worth it.

  • Kelly-Anne Bryan, RN
    06/24/2018 (11:17 pm)
    Reply

    Lyme and/or Bartonella may not cause obvious carditis or third degree heart block. A more common occurrence is other arrhythmias in otherwise healthy, young patients (and others). I have witnessed this first hand in ten years of nursing practice on a stroke and chest pain unit in a highly endemic area, as well as in my personal experience with these infections. Many times the cardiologist was not considering an infectious cause. Citing my own experience with Lyme, I could advocate in suspicious cases for testing, and educate doctors on testing limitations. Sometimes these patients would turn up positive, and antibiotics were started.
    I have had Lyme and numerous coinfections for about 40 years, misdiagnosed at least 31 years. After 10 years, there were palpitations and occasional episodes of SVT that went unevaluated. I wasn’t a nurse yet, and didn’t realize I needed to see a cardiologist. After about 15 years came additional episodic rapid afib, and transient 1st and 2nd degree blocks. After 20 years came episodes of non-sustained v-tach, potentially life threatening. All from undiagnosed tick infections with no associated heart disease or risk factors. My five children have gestational Lyme. One son has drop attacks that I believe are cardiac related. Due to his mental illness/rage disorder (probably from bartonella), he refuses work up.

    • Jess Bontrager
      11/04/2018 (2:43 pm)
      Reply

      Kelly-Anne, my Lyme disease is starting to affect my heart as well. I am 44 and was diagnosed 5 years ago. I had years of symptoms and attacks before diagnosis. I have had 2 of my 4 children tested because of sickness in both of them. Both are positive. I would have passed it on to them as well. One of my children was treated extensively but it didn’t help her. What advice would you have to offer me regarding the heart? I need to go see a doctor for it. I live in an area with very little knowledge on Lyme Disease. Thank you!


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