A Day in a Life with Bartonella and Lyme Disease

So Very Different Reasons

I am 47 years old and sometimes almost as invalid as my mother, 79, after a stroke. Every component of my body is riddled with disease–Muscles, tendons, fascia, bone, and brain.

The spirochete bacteria have entered and thrived drilling from blood vessel walls through tissue, ligament and marrow. Pillaging as they roam, multiplying along their way. On my stomach, lifting alternate arms and legs-my leg is not lifting. Swelling and disease have disabled my brain’s messaging. “It’s ok, sweetie, it will come back. We’ll just keep trying,” she says. I pelvic tilt and try to plank, hoping this time my muscles hear the brain’s message and follow along. They do not. I am incontinent despite constant kegels. I used to bend, flex, and stretch as well as a gymnast. Pliable, agile and entertaining.

Now, stiff and heavy as concrete I wince and tear up when morning arrives, knowing it will be 30 minutes of stretching before I can bend enough to pee. The closest I come to sports is tennis elbow and ankles the size of baseballs. Vicoprofen and Tramadol have become my daily pocket friends, accompanying me everywhere I go. I cannot stand more than five minutes-even changing sitting positions every few minutes. Terrified of becoming a stone statue.

Grocery store visits last less than 30 minutes. And don’t even think about reaching for anything on the bottom or top two shelves. Did you know that grocery stores only have six shelves? Shopping mall walks non-existent for more than a year. Stairs no longer an option, rather, a terror. God, please let there be a ramp. Special seating in the movie theater for me, Thank God for Handicapped placards.

Silence and darkness befriend me. My husband’s whistles drill through my brain, the shrill making me wince. Heat induces rashes imprison me in air-conditioned rooms. Sunshine beats me with migraines instead of nourishing Vitamin D. Soap without scent, chemical free detergent. My nose grateful for the perfume reprieve. The pretty bottles line the shelf instead of permeating into my pores.

Weekends are in bed—sexless, sleepless, tearful, and tired. Fatigue at the cellular level: Despair. Bartonella has made me foul mouthed and short tempered. Suicide has been a serious consideration.

And then I meet THE man. A data nerd since 16 in a research lab he has been. We are the same age, yet I feel twenty years dumber. A family of surgeons and PhD economists, Ivy League schools, NIH fellowship. He has methodologies, patents, protocols and most importantly: He has a C U R E. He mesmerizes me with his brilliance. Delights me with his artistry. He hypnotizes me with hope, delivering his conviction of healing. This is not miracles or faith healing only for those who believe enough. No shotgun of meds in hopes of hitting “something.” This physician has science, data, and disciplined analysis. God rewarded him with gifts of intuition and artistry. Take these antibiotics, supplements, rest, and meditate. Combining the Eastern, the Western, physical, emotional and spiritual to heal me. “This is a marathon, no short cuts here,” he warns. “But I will stay beside you the entire course.”

My new language includes LLMDs, co-infections, C4a, CD57, IGeneX, herxing, Western Blot Detoxing and dry-brushing. The words as uncomfortable and unpoetic as the disease. I take more pills each day than my age, dispensed at eight regimented times. Some, I swallow 12-17 at once, The others, gargantuan in size, one – at – a – time. Once, I swallowed two, and threw them up a long minute later. Every food morsel intake decided by whether the next round is with food Or on an empty stomach. My iPhone rings more often with alarms than texts and calls. I choose upbeat tunes to make me laugh John Mayer “In Repair” Huey Lewis “I Want a New Drug” Sting belts out, “Every day, another miracle” And the obvious “Cat Scratch Fever,” “Livin’ in the Limelight” and my favorite “Put the Lime in the Coconut.” I drink spinach and kale green smoothies to reduce inflammation. I drink protein shakes and almond butter because meat no longer appeals. I eat organic to reduce arsenic and heavy metal poisoning. Gluten free, dairy free, all in an effort to be diarrhea free symptoms and side effects abound.

Hope slips. But he is there beside me. He is ruthless in his methodology against this intruder. Endless in his compassion and kindness and conviction to cure. Muscles described as thick, fibrous, crunchy from disease instead of lean, supple, and limber. I am grateful for my therapist, forging deep with her steel tool to free my tethered spasm. I celebrate the day she announces laboring into my muscles is not Like digging into a solid brick.

I’m in love with Marcaine and Toradol injections. I worship my weekly dry needling sessions hoping this time, the 8” needles don’t bend. “First time in 17 months,” she says, “that I can isolate the muscle and pull it from the fascia.” We are past “the wall.” Just a few more miles to go. Three steps forward, two steps back, but forward is where we end up.

I have found my pelvic muscles. I can rise from bed without tears. I choose my supplies from four of the six shelves at the grocery store. But I still pray for ramps instead of stairs. I listen to New Age music, Phil Collins, and Seal. Joni Mitchell’s vocals no longer make me cringe. I wear P-O-E-M-E perfume to class on Saturday mornings. I sleep in five-hour increments, grateful for respite and repair. I do not have sex; I make love this time fatigued.

      For oh, so very different reasons.

Sharon E. Rainey, President & Founder, Neighbors International, LLC, 1146-D Walker Road, Great Falls, VA 22066, Phone: 703-759-2102, Fax 703-759-5415

Sharon Living with Lyme has some more great things to offer at her website.  Make sure to check it out www.myneighborsnetwork.com

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Pearls of Insight”