My throat clenches as tears want to stream down my face. Do I cry in front of everyone? My heart answers- yes. So I let the tears fall and feel the lump in my throat release.
To my left, less than 12 inches away in the IV infusion chair next to me, a woman’s body convulses and writhes in uncontrollable agony. She did not ask for this. She is not telling her body to spasm, twitch, shake and flop left and right. Her body is doing this against her own will and volition. The nurse gives her a push of a medication through the line leading into her heart to slow down the impulses that her nervous system is firing off far beyond the rate it should.
I used to push the same medications on people for seizures that were related to alcohol withdrawal or other neurological issues…. Sometimes I would administer them to people who were extremely belligerent, on a ventilator in the ICU, or if they were going to have a procedure like a colonoscopy or needed a broken limb reset and required minor sedation – but never did I give medication for tremors and seizures caused by something called Neurological Lyme Disease.
This isn’t a Sci-Fi-esque horror story. It’s a non-fiction horror story that is the unbearable reality that hundreds of thousands of people all over America and the rest of the world are protagonists in. Almost all of these people are told by medical professionals that their symptoms are “in their head.” To some degree, this is true. It is in their head, literally — the infection, inflammation, and subsequent brain damage. The heart palpitations are just “anxiety,” they say, where in fact, it might be Lyme carditis or bartonella – a bacteria that likes to gravitate toward heart tissue and can cause life threatening infection. The inability to get out of bed or walk 10 feet to the kitchen is “chronic fatigue syndrome.” The neuropathy and burning sensations throughout one’s body are “fibromyalgia.” Lyme and the hellacious nightmare it portends is continually brushed under the rug. It’s disgusting and saddening that HEALTH INSURANCE DOES NOT RECOGNIZE THIS DISEASE, yet other chronic illnesses that are actually often preventable such as Diabetes (unless it’s type 1), COPD, etc are 100% covered.
The CDC claims that 28 days of oral antibiotics will cure Lyme disease and that chronic Lyme is a fallacy co-opted by people who are in a state of desperation and unresponsive to the treatment that is currently approved for Lyme disease in the US, yet John Hopkins has an entire wing dedicated to chronic Lyme research and states that it does indeed exist based on scientific/clinical research and documentation. There is hardly any funding allotted for research on Lyme disease in this country. People are suffering beyond measure. Most are misdiagnosed for YEARS before finding out, and by then, chances of full recovery are slim to nil. They are left without anywhere to turn. They often end up on the streets or perhaps worse, institutionalized, because they are thought to be psychotic when they say they feel as though “bugs are crawling around inside of their body” or “I have incessant muscle twitching and tremors” but the neurologist’s 2 minute exam comes back unremarkable.
People are DYING, and a vast number among them are young CHILDREN ages 5 – 14. If Lyme doesn’t kill them, it’s not unlikely that they will one day kill themselves because of the immense physical pain, mental anguish, and lack of resources, answers, help, and recognition. Suicide is becoming increasingly more common amongst the Lyme disease population.
I unabashedly confess that I was really, really close… right on the brink of choosing death instead of life – until I received the proper intensive treatment my body required and it started turning a corner 4 months in. Was I willing to go from running several miles a day and living my best life as a nurse to being bedbound with excruciating pain and weakness and unable to talk most days/verbalize my thoughts or sleep more than an hour a night for the rest of my life? My answer was always no. I value quality of life over quantity of years.
Doctors and nurses (myself included) often jump to conclusions or are unwilling to really take the time to listen to their patients, think outside the box, or consider other potential differential diagnoses. Knowledge is power peeps! It could also save a life.