Only Half of Me--Sara Hesley: Part 2

Was my immune system wrecked?

As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.

Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.

I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.

Shortly thereafter, I took a position as a clinical assistant for a physician of restorative medicine in the Bay Area. During the job interview, she told me that she was undergoing treatment for Lyme disease and I shared a few of the still-scattered puzzle pieces of my experience with the same, but all of it in the past-tense. Over the previous few years, I’d learned a lot about this disease and its co-infections. I was terrified to think that this was what was happening to me. I didn’t want to believe it so I didn’t. In the throes of the assaults I knew that it was Lyme, but as I’d improve, for however temporarily, I was able to convince myself otherwise.

Now with a long commute, a stressful job, a very high rent and busy life, I knew it was only a matter of time before I crashed again into another assault. The assaults had begun to feel like a war was being waged within my body, like I was under attack from the inside out. Even when I was feeling well, my ability to do things was significantly lessened. One day I wrote in my journal, “I feel like only half of me…”

Then finally came the tipping point. This time, again, was worse than the last. And this time presented with crippling tremors and the undeniable onset of neurological involvement. For the expert I’d become at ignoring immense and constant pain, there was no ignoring tremors. There was no ignoring the look of fear in my Love’s eyes when he saw what was happening to me. My employer, the doctor, couldn’t ignore it either and she promptly ran tests of her own and referred me to a Lyme Literate MD.

The tests were positive and indicated both chronic and acute manifestations of Lyme disease, as well as Bartonella and Babesia co-infections. I knew going into treatment about the toxins and the Herxheimer reactions; but it’s truly beyond comprehension until you’ve experienced it for yourself. The whole thing, really, is quite unbelievable. I never, ever imagined that life could be like this for anyone, least of all me.

We moved back to Lexington in 2008. I was hopeful that I’d be well soon but I’m now in my third year of treatment. I was incredibly fortunate to find a physician here who would see me, in part, to report to my LLMD in California but also to provide direct, aggressive intervention if necessary. When we stopped the antibiotics last spring, I crashed again, the hardest yet, and ended up with a PICC line for intravenous antibiotic treatment, along with numerous other medications. For most of last summer and fall, I was so sick and so scared that I didn’t know what was going to happen. I wasn’t sure it was worth it.

Most of last year, 2009, was much like a bad dream, sometimes certainly a nightmare. Every step of the way, my Love Jesse, my family, and my circle of friends have surrounded me with their love and support. They’ve witnessed this nightmare but they haven’t run away. They’ve shined their Light into this darkness, kept the path lit for me, guided me when I’ve lost my way, picked me up when I’ve fallen down. My gratitude for my family and friends is immeasurable. I can’t even think of where I’d be without their circle of love and light.

As my health improves, I’m doing what I can to raise awareness about Lyme disease in Kentucky and across the Southeast US. The silver-lining of this dark cloud is that I can and will have a positive impact for someone else, some day, some how. This has not been for nothing.

Tomorrow is May 1, 2010 and I’m happy to report that I’ve been feeling well for four months. Very well, in fact. I’m vigilant with my treatment and cautious with my activities as I can feel the pain and neurological dysfunctions begin to return if I do too much. But this is the first time in a very, very long time that I can honestly say that I feel like a real person again. Only time will tell what the next chapter of this story will become. I’m keeping my fingers crossed, I’m making my prayers, and I hope that soon, with surety, I can confidently own the words of Jordan Fischer-Smith:

“Then comes the time when you start to get your life back--and it’s MAGIC!”

Sara Hesley, Kentucky

kentuckylyme@yahoo.com