My Story: A Journey Through Life with Lyme Disease and Chronic Illness
My chronic illness journey began 45 years ago at the age of 8, but it took the next 27 years of suffering and searching to receive a proper diagnosis.
In the summer of 1977 a bite appeared on my leg, surrounded by a red rash (not a bulls-eye rash), followed by a severe case of the flu: 105 degree fever, delirium, debilitating fatigue, extreme bone and muscle pain, excruciating headache, nausea — tale tell signs of Lyme disease.
There was no testing (reliable or otherwise) for Lyme disease at that time, at least not in the Midwest where I grew up as a child.
After a few days in the hospital and a short round of antibiotics (for what was presumed a brown recluse spider bite), our small town physician reassured my parents I was going to be just fine.
This could not have been further from the true reality of what was to come… a long and winding health journey.
Throughout my teen years, 20’s and early 30’s, I battled a multitude of chronic illnesses — leaving a trail of countless specialists, diagnostic testing, (mis)diagnoses, emergency room visits and hospital stays spanning all across this country.
Despite illness susceptibility, I was strong, fit, and an active athlete. I worked incredibly hard to achieve a successful career, beginning in public accounting and making my way as a healthcare executive. Over the years as work life and stress accelerated/ intensified, my body became increasingly weary. Constant bouts of the flu and unexplained viruses began to take over.
In the fall of 1999 a severe case of the flu ignited a significant health relapse, and by January of 2000 I was bedridden, weighing less than 85-lbs, and fearing death. Left with no alternative, I resigned from the executive position I had worked purposefully to achieve and valued greatly. The independent, strong-willed, fierce + feisty woman had faded. I had become completely dependent upon my husband and others for every aspect of life. No longer able to manage even the simplest of tasks.
Multiple specialist referrals and hospital visits eventually brought me to an infectious disease physician well versed in tick-borne diseases. Having been tested for Lyme disease using CDC standard testing (via local hospitals and the Mayo Clinic) — all negative — this ID physician firmly believed standard testing was flawed. In mid-2000, he sought testing through an independent specialty lab based in California (IGeneX). These tests results revealed, beyond a shadow of a doubt, Lyme disease. Additional diagnoses: Babesiosis, Bartonella, Rickettsia, Ehrlichiosis, (eventually mast cell activation syndrome, MCAS), along with a myriad of other chronic conditions.
Decades of misdiagnoses only exacerbated the severity of illness, allowing multi-systemic diseases to invade and break down my once strong, healthy body.
If only I had been properly diagnosed and treated when the original tick bite occurred in 1977, or anytime prior to the debilitating health relapse that occurred in late 1999-early 2000. Perhaps my health journey would have been completely different. Perhaps I would still be the high-functioning executive, strong athlete, independent woman I used to be.
My life has changed tremendously over the past 22+ years (ultimately, 45 years) due to this on-going battle with Lyme disease, co-infections and chronic, complex illnesses ruling my body. And while I am still fighting fiercely each and every day to find wellness, I hope and pray to learn from this trying and challenging journey. I remain cautiously optimistic with each new treatment protocol; leaning on my faith, my adoring and caring husband, family and friends, as we continue along this illness + healing journey..
My hope and prayers are for others, especially young and innocent children, to be spared years — decades — of constant pain and suffering; to be spared a lifetime of chronic illness and debilitating, life-altering challenges that can follow.
There is a need — hope and desperation — for prayers to be answered. Change is needed: continued advancements in research, reliable testing, effective treatment options, healthcare coverage for long-Lyme patients, improved/ advanced education and training of all medical professionals in the area of proper clinical diagnosis and therapies/ treatments of Lyme and vector-borne diseases — more than an 8-hour seminar!
The voices of the suffering must be heard.
Thank you to all who advocate and work tirelessly behind the scenes on behalf of the Lyme community. With constant effort and emphasis toward awareness, much needed change will happen.
To read the full, more in-depth version of my 45-year illness + healing story, please click the following link: A Colorful Journey Through Life with Lyme Disease and Chronic Illness (approx 10-min read).
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