Fortezza, Umilitade, e Largo Core - Courage, Humility, and Largeness of Heart.

Tuesday, May 4, 2010

My Lyme Story

People struggle to wrap their brains around my Lyme experience and I struggle with how to explain it without sounding pitiful.

I suspect I had Lyme's for a while before being diagnosed or even falling down ill from it. In the fall of 2006, a doctor thought I might have MS but also ran tests for Lyme; I tested negative for both. In the spring of 2007, I had a boiler room job where I was working 50+ hours a week. I would come home from work and pass out on the bed in my suit only to wake the next morning, change into a clean suit and repeat the process. My husband worried about me but I thought all my co-workers were doing the same thing (it turns out they were speaking in hyperbole, where I was speaking literally.)

I officially fell down ill on June 2, 2007 with flu like symptoms, including high fever and vomiting. From that point, it took them over two months to come up with the Lyme diagnosis. I ran a fever for 28 days straight.

 The story leading up to the diagnosis is long and humorous with the distance of time and includes more blunders than anyone should have to endure. (picture 7.5 hours in the ER, after being removed from D.C.’s Union train station on a stretcher because they convinced me I was having a heart attack, and the only diagnosis the E.R. could come up with was a bladder infection!!) Yes, this gives a good indication of the idiocy I had to deal with.

I spent a year and a half bedridden; when I was finally able to make it beyond the bedroom, we celebrated. During that time I slept 20+ hours a day. I had significant cognitive deficits: I temporarily lost my short-term memory, I lost entire conversations and I wasn’t able to follow a half hour TV program if I hadn’t seen it before. My ability to read, write, or access my long-term memory was hindered. My life is demarcated “pre-Lyme” and “post-Lyme.” Pre-Lyme I was very capable academically, so of all the things Lyme has taken from me, that is one of the hardest. I employed a neuropsychologist to help me figure out how to retrain my brain. The process of regaining access to my memories has been fascinating, though long and inconsistent.

These are my morning pills. I have to repeat the process in the evening.

I believe I have been through a total of 8 different courses of antibiotics (but I have lost count at this point.) My last course of antibiotics (a combo of Biaxin and Plaquenil) lasted for over a year and finished the summer of 2009. Daily I take several medications to assist in pain management in addition to other supplements to help manage the side effects of Post-Lyme Syndrome or the meds. To the right I have included a picture of my morning meds, I take even more in the evening. I battle nausea and other side effects from all these pills.

I believe in combining the best of both Eastern and Western medicine, so I swear by weekly medical massage and acupuncture. I have found that movement is key to reducing pain but I have also noticed that staying strong helps reduce my setbacks. In order to accommodate my unique needs I do private therapeutic yoga multiple times a week and pilates once a week.

I am an equestrian and I find that just sitting on my horse raises my spirits so much and in-turn helps me physically.

 Some days I am a strong and capable rider; other days I grab mane and my trainer leads me around the farm on a pony ride. I think this confuses people- that what I am capable of changes from day to day or week to week. There are so many factors that go into the mix to determine how I feel: the weather tops the list, but also stress, sleep, diet, change in meds, and if I have been pushing myself too much are the primary ones. But true confession: if there is something I have my heart set on doing, I manage to dig down deep and find the strength, however that usually causes me a setback.

There seems to be something about how Lyme affects the hypothalamus because it is common among “Lymies” to be constantly cold. I’m not talking about the “oh wow, I should’ve grabbed a coat” cold; I’m talking about wearing a winter coat, hat and gloves during the summer type of cold. I sleep with an electric blanket most nights, even hot Atlanta summer nights. Days that I feel worn down and in pain, I get particularly cold; they seem to go hand in hand. Of all the things that people don’t understand, this one is the hardest for me, I suspect because it is the hardest to explain.

Pre-Lyme, I went a million miles an hour constantly. A woman speaking about living with chronic pain said that those that live in chronic pain have a limited number of energy marbles, while the rest of the world has a limitless supply. I have had to learn to plan and ration these marbles in my post-Lyme life. I wear down so quickly now. (I find myself chuckling at the irony that my childhood baby-sitters would have loved for me to wear down; lord knows I was constant, boundless exuberance, which was exhausting to those in charge of my care.) Now, I have had to learn to pace myself and be patient with myself, skills I am not known for.

It is my understanding that Lyme's will be with us forever, similar to Shingles. It can flare up in times of stress (just what we need when we're stressed.) But Lymies can do things to help our bodies stay strong and prevent flare ups: eat well, sleep, exercise, be mindful of weather events (cold & wet are hard on me), try to reduce stress events or prepare for them.

With all the terribleness of this disease, I used it as an impetus for positive change. I am currently in my first year at Emory University's Candler School of Theology pursuing my Masters in Theological Studies. I am here because of my Lyme. I was bedridden for a year and a half, suffering mentally, physically and cognitively; I was so close to just giving up. Lyme is rarely fatal, but when you loose so much of your life, the finite nature of our time on this planet comes into stark contrast. So I decided that I was going to fulfill my lifelong dream of studying religion at the graduate level. When I made this decision two years ago, I had no idea how I was going to make it happen but I was determined. (Dr Aucott and I believe that one of my greatest tools in dealing with Lyme is my stubbornness, I am fully using it to my advantage.)
 If Lyme had not forced me to step back from my life, I would not have had the opportunity to follow my dreams. Do I consider getting Lyme disease a blessing? No. But I refuse to give in to this tragedy.

[editors note: I’ve been working on this essay for quite a while now. There is so much more to say. I will continue to work on this and will repost as new versions they develop.]


  1. Never Give UP! by Calling Glory check it out on Youtube, the words are incredible! I will be started treatment and I refuse to give up. My faith will give me the strength to get through this,it will test my faith, but I will be victorious. Thank you for sharing your thoughts as they are REAL. I appreciate that.

  2. My goodness, yes. I remember when i was nearly bedridden my friends telling me things like "well, at least you'll have time to catch up on that TV show/book/video game" and me not having the heart to tell them i couldnt even do that. I dont know what it is, but for the period where i was primarily resting i had both dyslexia and some kind of ADD that kept me from focusing correctly or absorbing information. I could only handle about 15-20 minutes of any activity before i had to move on. It was so frustrating.

    As for the cold thing, i am completely the opposite. I was always very pale and freezing cold, but since my lyme diagnosis i have gained about 50lbs and suddenly i'm warm all the time! I can go out in the snow in a t-shirt when before i wore sweatshirts year round! And now, i tan instead of burn! It's glorious! I have the most trouble with the summer. Always have. Even pre-lyme, August would leave me worn out and sluggish. With lyme, the heat is unbearable and the energy i have to expend just to walk down the driveway is insane.