I've written quite a bit about my goals for gluten-free eating but very little about my illness.
For seventeen months, since March of 2012, I have suffered a chronic syndrome my doctors determined to be a neurological condition. Probably not coincidentally, I was bitten by two tick nymphs, tested positive for Lyme Disease on an ELISA test, but I did not receive treatment for nine and a half weeks. In a strange series of missteps, my former doctor's staff told me alternately that:
1) the tests had not come back yet
2) I was negative for Lyme Disease
3) I should just keep taking the antibiotics
(what antibiotics?)
4) No, I could not speak to my doctor.
I demanded an appointment and finally got one, two weeks after the initial Lyme tests. When my doctor came into the room, her first question was, "How are you doing on the doxycycline?" That was ironic since I had asked, two weeks prior, for doxycycline and was refused "Until the test results come back." I later discovered the test results had come back positive within only a few days (during the time the staff was telling me their made-up story of the day), and the doctor had called in the doxy within two days of my office visit, but no one had bothered to answer my questions, call me, or give me straight answers to that effect. By the time I got the antibiotics, I was bed-ridden with brain swelling, a 24-hour
migraine, whole body joint pain, dehydration, and a deep brain fog that was more like a trance. I was out of work 22 days, and the next school year wasn't much better. With the best of intentions, I went to work only to succumb to long periods of fatigue, whole-body pain, and the feeling of having the flu
twenty-four-hours a day. I used all my sick days and then some, lost money and time.
I have an eight-year-old who was six at the time I got sick. When I was ten, my dad got lung cancer and spent his days on the couch. The couch swallowed up his life, and now, it seemed, it was my turn. To make matters worse, my former doctor refused to refer me to any specialist in Lyme or any other area. I changed doctors to a man who is, quite honestly, the best doctor in town. He recommended me to
an infectious disease specialist and a rheumatologist; however, all this accomplished was ruling out arthritis and Lupus. To complicate matters, my old doctor sent an entire medical file to the infectious disease doc but left out the results of the Lyme test. In fact, she did not send any documentation to show that a Lyme test had been done at all. This left me in the position of arguing that I had experienced Lyme with no evidence to support it. In other words, I looked like one of those self=diagnosing hypochondriacs looking for attention and running up medical bills until she gets it. I had one piece of info, the Walgreens record of her order for doxycycline, commonly given for bacterial infections; even so, each doctor in turn seemed suspicious of any attempts to mark the March 2012 tick bite as the start of all my symptoms. Was all of this cloak and dagger so my former doctor could avoid a Lyme diagnosis? I would soon learn that there is a stigma for doctors who dare to treat Lyme beyond the original antibiotic round.
My next stop is the neurologist. The only confirmation of a diagnosis is "Undetermined neurological disorder causing fibromyalgia and chronic fatigue syndrome." I have read enough research and patient blogs to understand that Lyme is a political disease. I keep telling myself to be thankful it's not cancer. A lot depends on how I spend my days. Avoiding stress, eating a gluten-free diet, using food as a pathway to healing, and doing yoga are all part of my plan. I have many friends in my home state with diagnosed Lyme, but supposedly, There are no Lyme ticks in Tennessee. I have heard a lot of stupid claims. "Lyme ticks are in North Carolina but not in Tennessee." "Lyme ticks only hitch a ride on deer, so there's little chance that they've migrated here," even though the CDC website shows tick migrations via bird, rodent, deer, and other small creatures from Maine to Florida and from Maryland to California. There's even a map to track migrations! The CDC recognizes "severe Lyme" and "neuro-lyme," but I've had plenty of doctors tell me there's no such thing.
A year of gluten-free meals is, for me, a needful journey. To prove living gluten-free is possible without sacrificing taste and decadence; to keep my mind occupied in good times and bad; and to pass on a legacy to my children that may prolong or even save their lives.
I also like to write, so it's all good.