MY LYME DISEASE JOURNEY
I grew up in the beautiful countryside of southwest Missouri. Small Town America with population under 1,000. Our family had a small homestead of about 15 acres, mainly woodlands, with quarter horses, a few head of cattle, large garden, fruit and nut trees. All more than enough to keep a tomboy busy, especially in the summertime.
During summer break from school, you would find me outside from morning chores until way past dark. (Something city kids, or kids of today in general, may not be able to visualize or truly appreciate.) Rarely a day would go by without a mosquito bite, or a tick(s) crawling on me. I remember several occasions where a tick would be attached, locked in for feeding time. We would use tweezers to remove ticks, most of the time, but fingers seemed more convenient. Today I scream at that thought. NO! STOP AND USE THE TWEEZERS – ALWAYS!
In the summer of 1977, a bite surrounded by a large red rash (not a bullseye) appeared on my leg. The timeline is a little foggy on how quickly after the bite my symptoms began, but I remember the specifics of my symptoms, as if it were yesterday. Not only because the experience was traumatic for a ten-year-old, but more so due to the fact the result of what did and did not happen over 39 years ago has stayed with me throughout my life.
After noticing the bite and rash, I became severely ill. Hospitalized with a 105-degree temperature, delirium, and severe flu-like symptoms: Nausea, debilitating fatigue, excruciating headache, deep bone and muscle pain. In the late ’70’s, little was known about Lyme disease, especially in the Midwest. There definitely were no blood tests, reliable or otherwise, for tick-borne diseases at that time.
Treated with the typical round of penicillin, for what my doctor insisted was a brown recluse spider bite. After a few days in the hospital, was sent on my merry way, basically with a pat on the head. Why would anyone doubt the diagnosis or treatment? I was in the hospital and the doctor said I was good to go, so then I must be okay. Right? For some reason (interjecting sarcasm) I remained sick and mainly bedridden all through summer vacation that year.
I continued to battle sickness – mononucleosis, the flu, pneumonia, etc., throughout my remaining elementary, junior high, and high school years. Even a common cold would knock me back down in bed for several days and sometimes weeks at a time. To treat the various on-going and persistent infections, I was given prescription after prescription of whatever antibiotic was being peddled by Big Pharma at the time. My flu-like symptoms would eventually subside, and I would continue to push forward. I was resilient despite being sickly.
The one constant I could not shake was the agonizing deep bone pain in my legs down to my toes, my arms and fingers. I would cry myself to sleep at night. My poor Mother would rub and massage my legs and arms with Ben-Gay (yuck!), and give me a teaspoon of aspirin crushed with sugar and water each night before she left for work. She was a medical assistant, and worked the night shift at the hospital where I first was treated and a frequent “guest”. I think the stench of Ben-Gay stayed with my Mom and me for years.
Determined to figure out the cause of my illness and excruciating pain, the doctor visits began to multiply. All to no avail, as we were brushed off and told I must simply be prone to getting sick. My pain was diagnosed as growing pains, and a result of my vigorous sports activities. REALLY? Prone to getting sick? Growing pains? This from the same medical group who when I had a severe allergic reaction to fluoride at the tender age of 13 told me to, and I quote, “put a bag over my face”! Small town docs in the ’70’s – gotta love ’em. I didn’t quite get the humor then, and I’m certainly not laughing now. Well, maybe I snickered a little as I wrote this, only because I hold an image of my 13-year-old self running around with a paper bag over my head. Funny not funny!
I continued to battle through bouts of chronic illness all throughout my 20’s and into my early 30’s. Specialist after specialist. Always treated with the general 10 to 14 day round of antibiotics for the various unspecified bacterial infections keeping me down. I had to take several medical leave of absences from work and college due to reoccurring mononucleosis. Then there were the multiple medications, including narcotics prescribed by a neurologist for my severe and debilitating migraines. I apparently was still “growing” as well, because my bone pain remained prevalent and excruciating.
One of the most challenging chronic health hurdles I dealt with the majority of my early adult female life was Endometriosis. I underwent seven surgeries over a ten-year time frame, beginning at age 17 to remove an ovarian cyst the size of a softball. I was plagued with constant pain and endometrial symptoms the entirety of those ten years. Before my seventh surgery, my doctor advised trying a six-month round of Lupron, which put my body into early menopause in an attempt to reverse the severity of my symptoms. That didn’t do anything but make me and everyone around me (ha!) even more miserable. As a result of treating this disease and the numerous surgeries, I was unable to have children, and I eventually succumbed to a complete hysterectomy when I was only 27. At the time, no connection to Lyme disease had been identified to all my illnesses. Today studies confirm the co-existence of Lyme disease in women with endometriosis.
Combine all of the above with the following: Years of a high-stress work life and career, and my desire and dedication to being as fit and healthy as possible. I continually pushed myself to the maximum limit and beyond. Add all of my chronic health issues and surgeries over the years with the final key factor – unbeknownst to me, there was evil Lyme spirochete reproducing, invading, and taking over my body – wreaking havoc!
In the Fall of 2000, I became ill with yet another virus and could not get back up on my feet. Days of feeling beyond lousy turned into weeks. I could barely get myself out of bed to go to work. The added stress of knowing people counted on me only exasperated my illness. I had responsibilities. Not like I was saving the world kind of responsibilities, but I had a relatively important and high-stress position that required me to – simply – be there and to be able to function. Physically getting to work had become a challenge. Add in the brain fog, blurry vision, debilitating migraines, and unimaginable fatigue. I was losing weight. I could no longer workout. Eventually my body simply shut down.
By January 2001, I was completely bedridden. My weight had dropped below 85 lbs. I’m 5’8″ and was an athlete. Emphasis on “was”. The person I used to be was withering away. Emergency room visits. Hospital stays. Countless vials of blood drawn and diagnostic testing from head to toe. Included with all of the blood tests were multiple Lyme disease tests – all negative. Correction. FALSE NEGATIVE.
As a result of being bedridden for months and unable to function much less work, I had to resign my position. My career I had worked so hard to achieve, came to a complete and unwarranted end at the age of 33. The independent, strong-willed, workaholic, fanatically fit, active, fun, I am woman hear me roar person vanished.
The frequent ER visits continued. Specialist and hospital, after specialist and hospital. Testing, testing, and more testing. Misdiagnosis after misdiagnosis: Fibromyalgia, Chronic Fatigue Syndrome, early stage MS, RA, only to list a few. There were times when my husband had to carry me up and down our stairs. I was totally dependent on everyone for everything. My body was continuing to withering away. The fear of dying was becoming quite real. There was some serious prayer action taking place. I am, and will always be, forever thankful for all of my prayer warriors!
I am also beyond thankful for a specialist referral that wasn’t a complete waste of time and money, and that actually amounted to – FINALLY – an accurate diagnosis. After an extended search and wait, I was referred to an infectious disease physician in Kansas City, who at the time happened to be one of the top Lyme Literate Physicians (LLMD) in the nation. I was diagnosed officially with Lyme disease in 2002, using the specialty lab IGeneX located in California.
Relieved. I finally knew after all of those years and decades what was causing me to be so unexplainably and chronically ill. Hard part over. Easy peasy now. I’ll take a few pills, and I’ll get back to normal. If only this would have been the case!
My diagnosis took 25 years, but my health challenges were far from over. My Lyme disease journey and the battle for wellness was only beginning. If only I had been properly diagnosed and treated when my original tick bite had occurred in 1977, or anytime before 2000. Perhaps my health journey would have been different. Perhaps my Lyme relapse would not have happened. Perhaps I would still be the active, athletic fireball of a woman I used to be.
I am still struggling and fighting for improved health – every single day. Two years into my current treatment protocol, I remain hopeful that my LLMD and I are on the right path to finding my long awaited, decades overdue state of recovery – and ultimately- remission. My Lyme journey has been exhausting and expensive (financial, physical, and emotional) – a hardship no one should have to endure.
My hope is that others, especially children, can be spared years of constant pain, suffering, and a lifetime of chronic illness. I also pray all of the debilitating and life-altering challenges that can follow – don’t.
CHANGE IS NEEDED. Accurate testing, improved treatment options, more advanced research, healthcare coverage, and better understanding and treatment of all tick-borne illnesses is essential. And the voices must be heard for those who suffer. With constant effort and emphasis toward awareness – CHANGE WILL HAPPEN.
Wishing for all who are fighting their way through the depths and darkness of Lyme disease – may you find your path to improved health.
Thank you for taking the time to read my LYME DISEASE story – my fight for wellness.
Terry💚The Blathering Lymie