Chris’ story of living with Lyme carditis

In 2011, after a summer full of trail running in the Northeast US, and tons of tick bites including one that was fully engorged and tough to remove, I suddenly became very ill with a fever of 105, a pinpoint rash covering my entire body, and a swollen throat. Thinking I had strep, I visited a family doctor who informed me she thought it was Lyme and ran a basic ELISA test (which came back negative and I later found out is only 50% accurate). I was given a few days of amoxicillin and sent on my way. I didn’t think Lyme was a big deal. I had close to a hundred tick bites in my lifetime and had never gotten sick before.

Over a few days the high fever went away but I started to get strange symptoms. Twitching in my hands, tremor, I lost the feeling in my hands and feet, heart palpitations, recurrent fever, dizziness, severely low BP, severe weight loss (50lbs), fatigue, weakness, joint pain, temperature intolerance, and more. I went to an assortment of doctors all who refused to retest me for Lyme via a more accurate test (western blot). I was given a few weeks of low dose doxycycline, but when my symptoms didn’t improve, allopathic doctors told me it must be something else like anxiety or depression and I should just take an SSRI or learn to live with it.

What was going on? Why were doctors disregarding the sudden appearance of strong worrisome symptoms in a previously healthy woman in her 20’s!? I was a runner, a music teacher, a straight A student in graduate school. I could no longer play my instrument because I couldn’t feel my hands. I was exhausted all day and my heart rate as a trained young athlete was shooting up over 200 at a walk, dropping into the 30’s mid-run and going into severe palpitations that lasted for days at a time. My bp was dropping to critically low levels making it nearly impossible to function. I couldn’t even eat because of a severe post meal blood pressure drop and resulting symptoms. How could I just “live with this?”

After a few months I met with a naturopathic doctor who helped tremendously via listening, believing his patients, symptomatic treatment, and referring appropriately. I had some oral antibiotic treatment from a Lyme specialist which was unfortunately not effective by that point. I was never able to access IV antibiotics and the only local infectious disease doctor in my area refused the referral on the basis of a negative ELISA.

Eventually I ended up in cardiology. Reluctantly. I had been treated poorly by many doctors by this point and I was giving up hope altogether. However, my symptoms were very severe and I knew I needed mainstream help. My first general cardiologist nearly instantly referred me to the head electrophysiologist of a major teaching hospital and he was excellent. Had I not met him, I’m not sure that I would still be here today. I had various tests documenting severe autonomic neuropathy which neurology believed was likely caused by Lyme. I had no sympathetic skin response in my hands or feet, my BP was undetectably low while standing, no heart rate variability to deep breathing, my BP dropped while running on a stress test and my heart would range from 30’s-200+ with NSVT, bigeminy, svt, etc. After multiple 30 day monitors, I received an implanted monitor and shortly afterwards my heart stopped while at home in second degree block leading to asystole. A month later, I was one of the first in my area to receive a special type of pacemaker (Biotronik) that could potentially help both my heart rate and blood pressure via a paced tachycardia response to hypotension. Unfortunately, the pacemaker worked as an excellent warning system for me but did not improve my blood pressure control.

Over a period of years, my electrophysiologist met with me routinely trying hundreds of combos of meds, dosages, pacing settings, etc. He didn’t give up even though I wanted to. On one occasion, I recall sitting in his office after a very bad month of symptoms and I asked him (crying) to shut my pacemaker off. As an autonomic case, the pacemaker was not a cure for me. There was no cure for me and that was very difficult to deal with as a young adult. I felt the pacemaker was prolonging a life filled with progressing debilitating symptoms and not “life changing” in a positive way like all the other pacemaker patients I encountered online experienced.

It was a very dark time for me, but I got through it. The electrophysiologist helped refocus my treatment towards improving my quality of life and I started refocusing my energy into running again. I had noticed that running made me feel better mentally and also stabilized my vitals temporarily when few other things could. However, it was very very difficult to compete 100% paced. When I hit a natural rate of 190bpm (easily) my pacemaker cuts my rate in half as a safety feature. This can cause severe symptoms that will drop me in a race. It is also very frustrating/impossible to try to run uphill. Often the pacemaker cannot sense or react appropriately. Running has been an immense challenge, but also a way for me to cope. I’ve directed my frustration towards it and still compete with the normal healthy athletes. I was the first pacemaker driven athlete to place with healthy runners at a nationally ranked running event in 2018.

I am currently 100% paced by a pacemaker with 71% being ventricular pacing for heart block that seems to be progressing. I rely on a hypotension medication via subcutaneous pump. When I don’t have that medication via pump I cannot eat without severe hypotension symptoms due to postprandial (post-meal) hypotension. I also require saline IV for hypotension due to how often my pressure gets emergently low (50/30) or undetectable (several times a day and sometimes continuously sustained overnight). I’m on several anti arrhythmia meds and have lost control of my glucose and temperature regulation. My glucose swings similarly to a diabetic 20’s-300 with no insulin use and is unexplained by endocrinology so I have a Dexcom glucose sensor implanted to warn me of hypoglycemia. I still cannot feel my hands or the sensation of pain or temperature on my skin. I’m also extremely fatigued and exhausted on a daily basis from a combination of wildly fluctuating BP, glucose and heart rate that is difficult to control. My bones are breaking despite normal bone density (two femur fractures in one year) and I get inexplicably anemic randomly. All of these symptoms are seemingly unrelated and most have been highly unusual for a person my age and difficult for doctors to treat. In general, after my autonomic specialist retired, I was left virtually on my own to try to manage a disorder that top specialists tell me is too complex. It has been overwhelming.

My life has been forever changed by Lyme and the effect it has had via damage to my autonomic nerves. It has been a long journey so far with an uncertain future. There are few specialists in the US for cardiac autonomic neuropathy and even fewer treatments.

One thing that has impacted me tremendously throughout this journey was my highly varied physician experiences. I am so grateful to my former electrophysiologist and my naturopathic doctor for their help, but also saddened by the numerous doctors that turned their back on me even when I had objectively documentable signs not only of Lyme, but also of serious autonomic damage and arrhythmias! Had I received an accurate Lyme test, a heart monitor sooner, or appropriate treatment of IV antibiotics early on, I would not be facing this today. Even as someone who is objectively diagnosed by a major teaching hospital’s electrophysiology and neurology department, I still face skepticism routinely by doctors unfamiliar with my case. I look young. I’m female. I’m not overweight. I don’t have high BP. I run. On the surface I don’t fit the mold of someone with a serious chronic illness like autonomic neuropathy, a heart condition, or Lyme. However, typically doctors aren’t seeing my bad days because on my bad days I can’t get up. I can’t sit up. I can’t eat or drink or literally get off the floor from a severe hypoglycemia or hypotension episode to get to an appointment. Not “looking sick” unfortunately is a common barrier to needed healthcare for unusual cases like mine and for young adults in general. I hope my story will bring some awareness of the impact Lyme can have on the heart and the impact that both negative and positive physician experiences can have on a patient’s life.

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One Comment

  1. Paula glenville 12th September 2018 at 1:19 am - Reply

    Sadly most doctors will not even look at Lyme disease & co-infections here in the UK, until the NICE guidelines recognise chronic Lyme, most of us Lyme suffers will not get treatment unless we go private. I have heart issues with the co-infections I have, but the cardiologist here in Coventry doesn’t take me seriously enough to investigate as my NHS test for Lyme was negative, and they do not recognise private tests from Armin labs. It’s the same with the Rheumatologist, ENT consultant and sadly the infectious disease consultant who I’ve never even had chance to be referred to, again he doesn’t want to know. Instead I was sent to a mental health day centre for 3 months, as the pain became unbearable, and 9 years later after my tick bite I’ve never actually been treated or taken seriously, just left to rot.

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