In learning that I have Lyme disease, someone recently stated “well at least it’s not deadly”.
I know people mean well, and I am not angry about the statement. I do, however, want to clear the air about this topic.
Actually, people do die from Lyme disease. Dr. Neil Spector, a doctor who found his way into Lyme medicine after he himself became sick from an unknown condition, recently lost his own battle with Lyme disease.
Lyme can affect literally every single cell and tissue in the body – therefore, it can affect every bone and joint, as well as your blood and lymph system, and every organ, including the heart. Dr. Spector’s heart was so badly damaged that he required a transplant. Ultimately, Lyme carditis, a condition where the bacteria directly affect the heart causing improper function, took his life.
Of the nearly 500,000 annual Lyme cases in America, it is estimated that as much as 10% involve Lyme carditis. Some patients die rapidly when their heart simply stops, but most suffer horribly for years, as do most chronic Lyme patients.
In December 2012, prior to being diagnosed with Lyme, I woke in the middle of the night with chest tightness and difficulty breathing. My husband rushed me to the ER, where it was found that something wasn’t quite right, but the doctor wasn’t able to pinpoint the issue. He recommended admission to the Cardiac Care Unit for observation. After numerous tests came back inconclusive, I was sent home without a diagnosis. Possible heart attack. Possible acid reflux. Possible stress. Many patients with Lyme carditis die because they are misdiagnosed. Lack of knowledge in our medical community leaves patients without answers and without proper care.
Lyme carditis is one way Lyme patients die. There are numerous others – either as a direct result of Lyme, or as a condition that develops because of Lyme. I have several friends with Lyme who developed cancer. One close friend lost her battle to breast cancer after a lifetime of fighting Lyme Disease. While most doctors only see the cancer, when so many Lymies get cancer, it becomes impossible to ignore that the weakened immune system and the bodies inability to fight sickness are part of the cause.
I battled insomnia for many years. At one point, it overtook me for several months. I would fall asleep for 5 minutes at a time, maybe an hour if I was lucky. Eventually, I felt my body shutting down (one of my doctors would later say my organs were shutting down). I laid in bed every night thinking that when I would finally close my eyes, that would be it.
Psychological disorders can manifest in Lyme patients even without physical symptoms. Lyme rage, psychosis, schizophrenia, dementia – all are very common and can indeed be fatal, especially when suicide is thought to be the only way to stop physical or mental pain.
More than understanding that it can indeed be fatal, I want people to understand that Lyme Disease and its co-infections and co-conditions can be horrifically painful and severely debilitating. Many patients suffer more than most can imagine.
Below are a few stories of people I personally have met – some are friends, others I met sitting in an IV lounge in my doctor’s office (names have been changed, including my own in one story).
When we talk with each other about our Lyme journeys, we often smile as we tell our stories (mostly because if we don’t, we might just break down in tears). We’ve been through hell – and survived and the only people who truly understand are those who have been there too. There is an odd comfort in knowing someone else gets it – even though we truly wish they didn’t.
At the end of it all, we are just grateful to be alive, especially when we are seeing some improvement and feeling a little hope that some day, we may conquer this beastly sickness. But make no mistake about it, death has loomed at many of our doors.
Lyme Battle Stories
Jim had been a college football star (back in the day). Now the owner of a successful IT company, his college trophies sat on his desk in his high-rise office. One day, his Lyme mind took him back to his college days and he picked up one of those trophies, a metal football replica, and began to run a “touchdown” – straight into the glass window.
Sarah laid in bed gasping for breath while her husband held her all night, shaking her slightly when he thought she had stopped breathing. They had been to the ER too many times to count and had learned that she was better off at home. By morning, her breathing had self-regulated and her exhausted husband got dressed and went to work. Families suffer greatly, especially primary care-givers who have little outside help and still have to pay the bills.
Steven sat in a recliner in the IV lounge anticipating his first round of a new medication. While patients often do many IV’s at home, the doctor always required the first dose be given by a nurse in the doctor’s office. Every new medication brought hope for improvement. For Steven, this particular medication induced a horrific reaction. Pain overwhelmed him and he suddenly stopped breathing.
Alicia lived with the most horrific and intense pain every day. At times, her body would just shut down. 7 times she stopped breathing. 7 times her heart stopped beating. The first few times, the paramedics took her to the hospital, where numerous tests were run but no solutions given. Eventually, the paramedics would simply resuscitate her and leave her at home to rest and recover.
Share Your Story
If you’d like to share your Lyme story and have it included above, please send me a message:
PhilippiJoy 