Lyme Carditis

One of the common manifestions of late stage Lyme disease is symptoms of the heart. For me, this includes:

  • Skipped beats or fluttery sensation
  • Light headedness
  • Heart palpitations 
  • Aching heart pain

At times, this would last only a few minutes. But more commonly, it lasts for hours and days. Often it comes on at night, waking me from a dead sleep. It can occur by itself, or with a full on fight flight attack which includes a full body adrenaline rush and sometimes a sense of dread of fear. 

Even if you take away the fear that Lyme itself causes you to feel for no reason, and this is a scary experience. The pain was particularly troubling to me. Lyme can infect any part of your body, and infections of the heart are one of the few ways the disease turns fatal, a fact my doctor warned me about very sternly. 

It was reassuring to me that my Lyme doctor (who operates mostly outside of an established medical system for fear of political persecution), sent me to the head of cardiology at Swedish medical center here in Seattle. It doesn’t get more legit in the Lyme treatment business than a real hospital! The man is Lyme literate! It felt really good to talk about Lyme inside hospital walls, for him to nod along as I reported each of my symptoms and for him to sing my Lyme doctor’s praises. 

He explained to me that the heart responds to Lyme in two ways: 1) it can be infected and damaged itself, or 2) it can respond to your body’s state of overall infection with signs of distress even if it’s not infected itself. Reassuringly, he said the latter is FAR more common and that in 95% of patients with symptoms like mine, there is no primary damage to the heart. 

Since your life is sort of at stake, he does test everyone pretty completely. I got a quick order issue for an echocardiogram and got strapped with this heart rate monitor for a 2 day weekend. My symptoms are sporadic so the hope is we’ll catch some of them in a recordable way. 

The weekend of my test happened to be the one weekend I was throwing one of my best friends bachelorette party. We went camping, which was great because I wasn’t allowed to shower with the halter on anyway and this way, I did lots of activity that might induce my symptoms. I did a (tiny, flat, 1 mile hike), I dug for ground crystals, I walked around exploring our Snoqualmie river bed… I even tried hula hooping! Lots of things this pooped out Lymie doesn’t get a lot of these days. 

I turn the heart monitor in next week and my doctor will look over the readings alongside the echocardiogram results. I’m confident I’ll be in the safer of the two categories, but the reassurance will be good to have. 

In the meantime, I’m wrapping up an amazing weekend with girlfriends, and in a few hours I get to peel all this sticky sweaty adhesive off my chest and ribs. Can’t wait!!


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