Story 34

How has Lyme Disease affected your life?

My Lyme disease journey began over 39 years ago at the age of 8, but I spent the next 27 years of my life fighting for an accurate 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 – all the tale tell signs of Lyme disease. There was no testing, accurate or otherwise, for Lyme disease in the Midwest, where I grew up as a child. Treated for a spider bite with a short round of antibiotics, and after a short hospital stay I was sent on my merry way. My parents and I assumed everything was going to be OK, because the doctor told me I’d be fine. This could not have been further from the true reality of what was in store for me and my long and winding health journey.

Throughout my remaining school years, my 20’s, and into my early 30’s, I battled a multitude of chronic illnesses. Collecting a trail of countless specialists, diagnostic testing, misdiagnosis after misdiagnosis, ER visits and hospital stays spanning all across this country.

Despite my sickliness, I fought fiercely to be strong, fit, and an active athlete. I also worked hard to achieve a successful career, beginning in public accounting and then making my way into the profession of healthcare administration. But over the years, as my work life and stress accelerated, my body became more and more weary. The constant bouts of the flu and unexplained viruses began to take over.

In January of 2001, I was struck down by a severe case of the flu once again. A significant health relapse leaving me bedridden, weighing less than 85lbs, and fearing death. I was forced to resign the position I had worked purposefully to achieve and valued greatly. The independent, strong-willed, I am woman hear me roar, fierce and feisty woman had faded. I was withering away and completely dependent upon my husband and others for every aspect of my life. No longer able to even manage the simplest of tasks.

Specialist and hospital after specialist and hospital continued. I was finally diagnosed with Lyme disease in 2002, and later with Babesia, Bartonella, Mycoplasma, MTHFR gene mutation, and a myriad of other chronic conditions. The decades of misdiagnoses only exacerbated the severity of my illness, allowing these diseases to invade and completely break down my once strong and healthy body.

If only I had been properly diagnosed and treated when my original tick bite occurred in 1977, or anytime prior to my Lyme relapse in 2001. Perhaps my health journey would have been completely different. Perhaps I would still be the independent, athletic, active, fire ball of a woman I used to be.

My life has changed tremendously, especially over these past 17 years, due to my battle with Lyme disease, co-infections, and the multitude of chronic illnesses that have consumed my body. And while I am still battling and fighting fiercely – every day – to find wellness once again, I hope and pray to learn from this trying and challenging journey. I remain optimistic and lean on my faith, my adoring and caring husband, my family, and my friends, as I continue this fight.

My hope and prayers are for others, especially children, to be spared years – decades – of constant pain and suffering, to be spared a lifetime of chronic illness and all of the debilitating and life altering challenges that can follow.

There is a need, a hope, and desperation for prayers to be answered. Change is needed. Accurate testing is needed. Improved treatment options are needed. Advanced research is needed. Healthcare coverage is needed. Better understanding and treatment for all tick-borne diseases is needed. The voices of the suffering need to be heard.

With constant effort and emphasis toward awareness, someday, change WILL happen.

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.

What inspires you?

I am in awe of all nature has to offer. I am a wannabe photographer.

I love capturing beautiful sunrises – representing a new day – a new beginning.

“If you must look back, do so forgivingly.
If you must look forward, do so prayerfully.
However, the wisest thing you can do is be present in the present… gratefully.”  ~Maya Angelou

Terry’s blog with an updated story; click here. (formally ColorMeLyme)

RIP Terry Mayfield, you’ve always encouraged me since the beginning of this project and I will miss you. -Lauren