Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Lyme and the Heart. The Achy Breaky Heart.

giphy (3)Lyme and the heart; where do I begin? I have this list in my head of my top ten worst Lyme symptoms and heart problems come in at around number two. It’s been my ever-living nightmare.

The heart is so connected to the rest of the body and mind it seems that it takes so little to set it off. You know that horrible adrenaline rush and sudden pounding heart you get when you catch yourself speeding past an idling cop car parked stealthy behind an overpass or even in broad daylight but you were too stupid to see it coming? I lived with that feeling constantly for the first four months of my illness. If you want to compare horror stories, I’ll tell you this right upfront, that is what I am bringing to the table. If I was at home, I was clutching an over-sized pillow just trying to endure it. If I was required to leave the house (I actually tried to maintain my giphy (5)job at the time) I was clutching my chest in some form or another. After those four months it began to recede here and there, only popping back up after eating, in the evenings, or early mornings as I woke. My heart would also explode out of my chest if I stood up, changed positions, talked for more than a sentence or two, walked for more than ten feet or so, laughed, or basically did anything human. I was constantly short of breath, experienced chest pains, vascular headaches, and every kind of flip-flop, skip, thump, and ricochet feeling a heart can produce. Lyme-induced heart problems and me… we go way back. And I hate it.

Lyme bacteria can affect all parts of the heart, including the conduction system around the atrioventricular node, both outer and inner membranes of the heart, the actual cardiac muscle itself, and less frequently, the cardiac blood vessels or heart valves. Lyme bein’ all non-discriminating and stuff. Those familiar with the immune system’s power may not be surprised to learn that tissue damage to the heart does not come from the bacteria itself but results primarily from the inflammation that occurs as the immune cells respond to the bacteria that has entered the tissue. Friendly fire.

Let’s explore some of the frightening things Lyme Disease can do to an organ that literally keeps us alive from second to second. It will be fun!

Heart Block – this is the predominant cardiac manifestation, but usually only in partial degrees (there are three). Heart block occurs when the electrical signal that controls the contraction of the upper and lower chambers of the heart is impaired. You may think “Oh it’s that darn bacteria playing bad electrician on me!” but no, it is from inflammation-caused swelling of the tissues to such a degree that it is blocking the electrical signal as it tries to disperse through the heart’s chambers. No signal, no contraction, no pump, no blood flow, no happy, maybe die.

lyme-disease-heart-AVblocks

Heart block is usually mild with quick resolution pending proper antimicrobial therapy, and some cases will even resolve spontaneously. Common symptoms include light-headedness, fainting, shortness of breath, palpitations, and/or chest pain. Vague right? I mean like, there are a million other things that can cause these symptoms and many of them relatively benign. To freak out or to not freak out, that is the question. If you want to freak out, definitely read the next paragraph.

Once in a while a poor, unfortunate soul will get complete heart block (final stage). If you acquire medical attention soon enough you will undergo the insertion of a pacemaker, usually temporary, to keep the heart beating. If you don’t, well, there’s sudden death to consider. Back in 2013 The Boston Globe reported on three people, ages 26-38, who experienced sudden death from complete heart block all within 13 months of each other. None of them were known to have Lyme Disease before dying and their Lyme Disease was only discovered after their hearts were sent for pathology exams prior to organ donation. Another close call occurred when a boy collapsed while walking his dog. His Lyme was only discovered due to the familiarity with Lyme that a doctor overseeing his care had. He was treated with antibiotics and a pacemaker and fully recovered. There are other cases like this, including a 17-year old honor student who died suddenly. Lyme was discovered in his blood, organs and heart. Now that you’ve gone white-faced and paralyzed in fear, relax. Complete heart block is rare. Moving on.

Lyme Carditis – this occurs when bacteria that has disseminated in the blood establish infection in heart tissue. It usually only happens in the presence of joint or nervous system manifestations. Lyme Carditis occurs in about 4-10% of untreated patients (so they say), with higher rates if you are lucky (unlucky?) enough to have an asymptomatic heart, obvi. Lyme Carditis can lead to Heart Block. Interestingly enough, studies show a slight male predominance with peak occurrences in the ages of 5-14 years and 44-59 years. Studies seem to be underway to determine if underlying heart disease correlates with an increased risk for cardiac involvement in Lyme patients. Although it sincerely pains me to link you anything to the CDC, you can read more about Heart Block and Lyme Carditis here. Just remember, I plead with you, just remember, the CDC has inaccurate statistics of anything Lyme related due to under-reporting and their ridiculously narrow qualifications for diagnosis.

Pericarditis  – in short, pericarditis is inflammation of the pericardium, which is Pericarditisthe little sac that surrounds your heart. Fluid usually becomes trapped between the heart and this sac and you will usually feel chest pain and irregular beats. It can lead to Pericardial Tamponade or Cardiac Tamponade (same thing, weird name though eh?) which is an acute complication where too much fluid or other gross things accumulate in the pericardium faster than it can stretch to contain it. End result? Dangerous compression of the heart. This can be fatal. But again, stop worrying! Us Lymies like to get ourselves worked up over everything. I know my reassuring is useless though. Even if I were to stop talking about this stuff you’d still close your browser and worry. Or perhaps you now have 7 tabs open googling this stuff and trying to convince yourself you need to go to the emergency room like, now. Really, it’s your call. But I’m going to continue on.

Myocarditis – This one is where the actual heart muscle itself is inflamed and damaged from spirochete invasion. Thanks again, Lyme. Amirite? The most common symptom is shortness of breath during exercise or exertion, or at night when you lay down. But also, fatigue, heart palpitations, chest pain or pressure, and swelling in the legs. Rarely, abnormal heart rhythms that lead to fainting and chest pain may also be present. Or none of these may be present.  Sometimes you have stuff going on and you have no idea. I should really stop scaring you now. But maybe I shouldn’t. Lyme is scary. Lyme is serious. Lyme doesn’t just give you a rash and some joint pain. Lyme is straight up cray. Below are some actual spirochetes in heart tissue, by the way. spirocheteinhearttissueforweb

giphy (2)

My thoughts exactly.

Heart Palpitations – Show me a Lyme patient who doesn’t have heart palpitations and I will do my own fainting right here and now. Heart palpitations have as many presentations and causes as there are stars in the sky. Hyper-awareness of your heart beat, perceived abnormality in your heart beat, hard beats, fast beats, slow beats, paused beats, skipped beats, happy beats, sad beats, funny beats, stupid beats, purple beets, baked beets, tasty beets, I like beets… where was I going with this? Oh right, all of these stupid beats (I hate heart palpitations they are all stupid beats) can be filed under “heart palpitations”. They can be intermittent or constant, vary in frequency and duration, make you dizzy, short of breath, make you sweat, give you a headache, or cause chest pain. But whyyy?

giphy (4)

Frankly, causes of heart palpitations (aside from previously mentioned heart problems) are too numerous to name. I will just skim some common ones.

  • Extra cardiac stimulation of the sympathetic nervous system (flight or fight part), or inappropriate stimulation of the parasympathetic nervous system (rest and digest part), particularly the vagus nerve which supplies the heart. Anxiety, stress, or gastrointestinal distress will all affect the vagus nerve and thus cause palpitations. Ever get all sweaty and pale-faced and feel your heart race if that spicy food you had last night is on the tail-end of its journey? That’s your vagus nerve in action… urging you to find a restroom while over-stimulating your heart at the same time. Why God put the two systems on the same nerve defies my reasoning. But He did.
  • Sympathetic Nervous System overdrive (Sympathetic Overdrive – my #1 worst Lyme-induced disorder) which can result from panic disorders, hypoglycemia, some antihistamines, anemia, heart failure, and mitral valve prolapse. Note – all of these conditions can be caused be Lyme, except the anti-histamine issue. That’s all you.
  • Hyperdynamic circulation such as seen in pregnancy with blood volume increase. But Lyme doesn’t make you pregnant, so let’s ignore.
  • Cardiac dysrhythmias or every way in which your heart and ventricles and atrium and whatever cannot work in harmony and thus create a weird heartbeat. We’re talking atrial fibrillation, ectopic beats, premature ventricular contractions and premature atrial contractions… that sort of stuff.
  • Nutritional deficiencies, especially electrolyte imbalances of magnesium, potassium, and calcium. Look out for low levels of taurine, arginine, and iron too. Lyme is notorious for causing low magnesium levels. Every Lyme patient should be on magnesium supplementation.
  • Hormonal imbalances or shifts. All you women out there… you feel me? Can I get an Amen from the choir! Lyme screwed up my hormones. Lyme may have screwed up your hormones. Low estrogen, low progesterone, high estrogen, high progesterone, low testosterone, high testosterone, all can cause a flip-flop here and there. Lyme can also mess with lesser known hormones as well that will have a direct effect on the heart. Aldosterone is primarily responsible for regulating blood pressure by regulating blood volume by regulating water retention. Still with me? Lyme has been playing games with my aldosterone for almost a year now by allowing prolific potassium loss. I just can’t keep it in. I’m on huge amounts of potassium supplements. And, because I have Lyme and thus I too, freak out about everything, I live in constant fear that my high potassium intake is going to stop my heart one day. Oh the funny conclusions we come to living every day in “Lyme Anxiety”.
  • Finally, things we don’t know. Is it possible that excess cytokine responses and systemic inflammation can aggravate the heart to a degree? Sure. Is it possible that widespread toxicity usually found in those with Lyme can aggravate the heart? You probably betcha. See, I can go on.

So, what now? What’s a Lymie with heart symptoms to do? First, for the sake of all of us, please, sit down and relax. You aren’t going to die. Probably. Have you had an EKG/ECG? Good. I’ve had eight. Oh wait, you haven’t? Maybe you might want to request one.

Have you had an ultrasound of the heart? Good. I did too. But wait, you didn’t? Kay, maybe get on that.

Did you request a bubble test with that ultrasound? Awesome! You’re way ahead of me. I got mine done too. No? Order that too so you can rule out any pesky holes in your heart.

Did you wear a Holter monitor or some other kind of take-home heart monitor for a while? Gosh we are so on par! Mine was for 30 days. I passed. Oh, see now if you haven’t, maybe consider that.

Did you complete a stress test? Okay you know the drill.

If all of these tests showed nothing concerning then really, seriously this time, sit down and relax. Whatever heart symptoms you have are almost positively benign, but also really, really annoying. I get that. I’m with you. Lyme and the heart… ugh I could just throw something. That’s how uncomfortable I’ve been for almost two years now because of it. Just be patient, make sure you are getting good treatment, and wait for it to go away. Magnesium helps. Adequate electrolyte intake helps. Become the king or queen of daily detox. Through treatment and these additional measures, my own heart is slowly calming down, but oh so slowly. So wait it out.

In the meantime, learn to live with your achy breaky heart. Sorry.

sick heart

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30 comments on “Lyme and the Heart. The Achy Breaky Heart.

  1. cocww
    July 17, 2017

    Great post, I’m 32M and have had the same stuff for 16 months. So many doctors, so few answers and finally getting treatment. Treatment is unfortunately not an instant cure, I’ve been told to expect around another 6-8 months of symptoms after Lyme is eradicated from my body.

    Good luck with your fight.

    Liked by 1 person

  2. Vergarm
    July 14, 2017

    Do you mind sharing some of the Lyme meds you’re taking? I’m taking some herbs but would like to get some alternatives. thanks

    Like

    • tarathackeray
      July 14, 2017

      Feel free to message me through my Contact Me tab and I’m happy to talk more about my protocol. Thanks!

      Like

      • vergarm
        July 14, 2017

        thanks. i sent you the message.

        Like

  3. Donna Mac
    June 15, 2017

    I have felt awful for months. I have actually removed 9 ticks of all sizes attached to me in the last three months. I live in a wooded area and have three dogs but they are treated with tick prevention. We see white tail deer on the outside of our fence occasionally. I never saw a bloated tick and normally know when I have a tick bite because of intense itching. Three weeks ago I developed slow heart rate, skipped beats, headache, neck pain, fever and chills. The next morning I went to urgent care and they put me on doxycycline. I’ve since had blood tests and am waiting for the results. I have always had heart palpitations but more often the past few months. I’ve had EKG, ultrasound, and nothing showing up. I am weak, fatigued, have body aches and cannot tolerate a light beer anymore. I have a panic disorder that is now worse. My doc wants me to take doxy for 30 days. I have not had any slow heart rate episodes since that first night. Am I being treated correctly? I am so miserable.

    Liked by 1 person

    • tarathackeray
      June 15, 2017

      I’m so sorry 😦 I would say that if your symptoms do not resolve after those 30 days find a Lyme specialist. Your history, tick but exposure, and increasing symptoms are very indicative of Lyme, if not co-infections as well.

      Like

  4. Frankie
    June 15, 2017

    My western blot came back with only a single band of igM p23 ab, which according to a lot of people is lyme specific. Doctors probably won’t diagnose me because of CDC standards but my symptoms alone SCREAM Lyme. My most troubling symptoms are cardiac, which is what lead me to this article. Full workup was normal but I was diagnosed with POTS (dysautonomia). I have sudden racing heart surges all of the time, a basically paralyzed colon, achy rib cage, shortness of breath, upper back pain, vision issues and constant muscle twitching all over my body. The tachycardia after I eat is seriously unbearable. I’m sending new labs to igenex next week. Sound like Lyme?

    Like

    • tarathackeray
      June 15, 2017

      Very possibly Lyme! For nearly three years my heart pounded and raced after every meal and it was enough to completely dread eating. The higher the carb/sugar count in the meal the worse it was for me. Treatment has largely eliminated my heart symptoms now… finally. Sometimes you have to pursue against the common medical grain with this illness. And sadly, few tests can definitely prove it and symptom comparisons will always be inconclusive… some of us have to just jump off the cliff and pursue Lyme. Best of luck and hoping for more clarity for you! The heart symptoms are truly life disrupting and deeply uncomfortable!

      Like

      • Frankie
        June 15, 2017

        Oh yeah it’s beyond debilitating. I wouldn’t pursue lyme as much as I am if it hadn’t all happened at the same time as neuro, gastro and arthritis problems. I honestly don’t know of many other diseases that mess you up in such a spotty, sporadic way. And I really started to consider it after the girls in my POTS discussion forums kept mentioning it. Let’s face it, 26 year old men in good health don’t just randomly develop POTS. There is a 4-1 female to male ratio in people with this syndrome, most of which are either developing teens, postpartum, or undergoing spine trauma or another traumatic event. Lyme is my main route because it’s the only thing that makes sense for me. AND I have a positive Lyme exclusive band. Do you ever feel like you sound like a crazy person when you talk to people about this? Lyme is so scandalous and misunderstood. Also, I’m having a friend prescribe me 200 mg of doxycycline before I head to and LLMD even though it seems like I’m probably in chronic stages already. Think this is worth it? GREAT read by the way. Most of these arrhythmias are all too familiar.

        Liked by 1 person

      • tarathackeray
        June 15, 2017

        Haha I avoid the sounding like a crazy person these days by just not talking to normal people in depth about Lyme! I think the Doxy is with it just to see if you can provoke a herxheimer reaction, then will have another form of confirmation. Being that you have cns involvement, the doxy is unlikely to really make a positive impact, but great for evaluating your reaction to an antimicrobial (which will be useful info to give a potential Lyme) as well as tying things over until you can get in to an llmd should you feel more comfortable taking at least something!

        Like

      • Anton
        July 26, 2017

        Hi- I live in NZ but caught a tick from Sweden. I’ve lived with constant muscle twitches and cardiac symptoms for about five years now, as we have no Lyme specialists here and my heart tests havent show anything. Could you let me know what your treatment protocol is please? Thanks also for the very helpful information in your piece- nice to know I am not alone! – Anton

        Like

      • tarathackeray
        July 26, 2017

        Anton, send me a message through the contact me tab and I can share protocol info, thanks!

        Like

  5. Barb
    May 3, 2017

    So I have pacs/pvcs and now I get episodes of afib, but I have all test normal no other health issues at all. So I took the Lyme test. Had to retake so I have 41,23,30 something positive. I got rechecked so I wanna find out if I do have it will it stop these damn episodes and pacs pvcs

    Like

    • tarathackeray
      May 3, 2017

      Well you do have some Lyme specific bands, so you have been exposed. Unfortunately it’s near impossible to confirm Lyme is definitely causing your heart symptoms until you treat and they disappear. Best of luck, I know how annoying and uncomfortable heart symptoms are!

      Like

  6. Vergarm
    April 29, 2017

    What kind of treatment did you get for your heart if you don’t mind me asking?

    Like

    • tarathackeray
      April 29, 2017

      I just stuck with treatment for Lyme (antibiotics and anti-malarials) and my heart calmed down over time.

      Like

      • Vergarm
        April 29, 2017

        Thanks for responding and glad to hear you’re doin fine now.

        Like

      • vergarm
        April 30, 2017

        Hello again, I know you did EKG, stress test etc. but did the doctor performed cardiac cathetherization? I’m going thru the same heart symptoms and have lyme too. I’m seeing a cardiologist just to make sure. Thanks

        Like

      • tarathackeray
        April 30, 2017

        No I didn’t. There was nothing in all of my other cardiac workup to suggest further testing would reveal anything. For me, my cardiac symptoms proved to be neurally mediated (dysautonomia). My heart was totally fine.

        Like

      • vergarm
        April 30, 2017

        Thank you. I had to google ‘dysautonomia’. lol

        Liked by 1 person

  7. Elizabeth Spencer
    February 9, 2017

    I have been living with lyme for, oh, about 5 years now, only been diagnosed for the last two due to lyme induced mammalian meat allergy! But anyways ive had palpitations for the last four years and last night they sent me to the er. Ive had about six cases of lyme and every time you get a case and go on doxycycline to ” cure it” the alpha gal proteins rise in your blood which in turn causes more symptoms of lyme and causes it to be more severe and less responsive to treatment. So even if we laugh and joke about being lymies, please everyone be aware of how serious our disease truly is and lets spread the word and start educating the population with the facts. Most people think it’s just a quick fix and visit with a doc, but, the cold hard truth is kept from the general population. I wish I would have been better informed, I may have taken it more serious and not in the place I am now with it.
    Dear lyme disease,
    Screw you, you wont win!

    Like

  8. Sue Letwin
    February 5, 2017

    Omg. U made me laugh. Thank u! I’m thinking of writing a comedic book about my Lyme experience. I mean, if we Lymies can’t laugh, what is there to live for?

    Liked by 1 person

  9. Jason
    January 9, 2017

    Great write up! U were basically describing the last two years of my life!

    Like

  10. Julie Windsor
    August 9, 2016

    I too have had heart distress from Lyme. A recent test (ultra sound?) showed that the right or left ventricle of my heart is enlarged. My Lyme is weird! I tried to work part time as a care giver (house cleaner, meal maker, doctor taker, etc..) for a couple of years, even though I am on disability, have had LYME for 23 years, 21 years improperly diagnosed as Fibro. During my time working I would run crazy fevers many, many times a day. I was so weak & wiped out, I don’t know how I did it! I think maybe my heart enlarged while I was working hard, running a fever. I LOVE YOUR BLOG! YOU HAVE GIVEN ME MORE VALUABLE THAN ANY OTHER SITE! Thank you from the bottom of my heart!, my achy, breaky heart!

    Liked by 1 person

    • tarathackeray
      August 9, 2016

      Aw thanks! Wow you absolute trooper. I hope your sweet heart heals soon 💖

      Like

    • Rachel
      August 28, 2017

      I had Lyme Disease in 1990 when they really didn’t know what it was.
      I only went untreated for four months, but that was enough time for the bacteria to spread and hide everywhere. My heart rate finally made it down to 100 beats per minute and has stayed that way for the last 20 years. The palpitations still happen and they are still intence, but they are happening on average only three times a month. I guess this sounds like a success story compared to all the others that I’ve read. This is actually the first time I have written in about my Lyme Disease because it always seemed like I was improving since those first HORRIBLE five years.

      In May of this year I caught a really bad virus that matched all the symptoms of mumps, but no doctor would confirm. It doesn’t matter what the virus was. All that matters is the virus flipped out my immune system and I am back in Lyme Disease/doctor hell. (arthitis going crazy, heart palpitations increasing, chest pain almost constant, swelling and severe tingling in both hands, moderate tingling in both feet, extremely dry eyes, CTscan shows my saliva glands permanently being damaged by my immune system creating severe dry mouth, voice problems, and over acidic stomach which is slowly turning into acid reflux). The list may actually go on, but I’m getting too down hearted to list any more.

      I’m don’t know why I have entered this conversation with the rest of you at this time. I think it’s because I needed to talk to people who would actually believe me. Being one of the early cases means no one (the doctors or myself) know what is happening or going to happen. I admit to being really scared for the first time in decades. Thanks for letting me share.

      Liked by 1 person

      • tarathackeray
        August 28, 2017

        Rachel, I am so sorry to hear of your recent struggles. It seems the immune system is always touchy after a Lyme diagnosis. Thanks for sharing, I believe every word. I would even consider finding a Lyme specialist again, that nasty virus may have triggered some sort of relapse too? Keep fighting 💚

        Like

  11. J
    May 1, 2016

    So refreshing to read this post! Heart issues have been a big problem for me since my health crashed 3 years ago. I have so many crazy symptoms that start with my heart but every test I have done says heart is all good. It’s been very frustrating and scary for me. I currently treating babesia so hoping treating this will improve my heart symptoms.

    Like

    • tarathackeray
      May 1, 2016

      I can empathize! Heart symptoms have been one of my worst issues as well. It’s incredibly uncomfortable. Here’s to getting better!

      Like

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