I have Lyme. I’d like to not have it anymore. I also just want cake.
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 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.
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 the 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.
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?
Frankly, causes of heart palpitations (aside from previously mentioned heart problems) are too numerous to name. I will just skim some common ones.
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.