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We had it all planned. The burgundy floral dress and black flats. The tiara for her hair, after it’d been all froo-frooed up in some girly style. She looked so beautiful. I hope it’s not the last time she chooses to accompany her dad to the yearly Father-Daughter dance, but I’m pretty sure that it won’t be. Because our daughter is not your standard 10-year-old kid. She knows what really counts in life. She’s a survivor.
Since I wrote a column last winter about Laura’s diagnosis of Lyme disease, I have been barraged with mail and phone calls about the disease. I wrote the column because we had found a reason for our child’s unbelievable joint pain, her insomnia, her crushing fatigue, her inability to concentrate one day and get her usual “A” the next. Lord knows, we’d gone to countless doctors for almost 4 years before she was eventually diagnosed. Finally the right test was run, at the right lab, and answers were forthcoming.
Although I am skeptical about giving a totally positive report, our girl has come a long way in 9 months on antibiotics. For getting a diagnosis of Late Disseminated Lyme disease means you have a battle ahead, and not an easy one at that. If only the symptoms had been recognized early, several weeks of antibiotics would have ended the ordeal.
With what we’ve gone through, the thing that concerns me most and has spurned me on to attend the Literati for Lyme in New York with the top researchers from Columbia University, and to follow up with writings about Lyme in this paper, are the unbelievable misconceptions about this illness, a disease we hear little about that has in reality grown to epidemic proportions in our country.
For example, most people, including docs who are not literate in Lyme, think it only takes a week or two of antibiotics to cure Lyme disease. If it’s a late diagnosis, a year or two of meds, or maybe IV antibiotics, may be necessary. Another fallacy is that the Elissa test is the right preliminary testing tool. In truth, its results are nearly worthless, according to Brian Fallon, M.D. from Columbia University. Most folks think you have to have a rash to consider a diagnosis of Lyme. The truth is that the majority of Lyme patients never remember having a rash at all. My daughter did have a rash, for six months. I was told it was viral in nature. It was discounted along with her stiff neck, countless strep infections, joint pain, 4 cases of mononucleosis, and a host of other ills.
But what concerns me most after my columns ran are the phone calls I’ve received. There was the man who called about his wife who is so ill she crawls to the table each night. He is a forester who sees ticks on his clothing every day. Or the mother of the teen-age girl with rheumatoid arthritis symptoms who has now surrendered ideas of marriage and motherhood. There was the call from the frenzied mom whose child had a tick embedded in his scalp after playing in the yard. None of their health care providers ever tested for Lyme. Or suggested using broad spectrum antibiotics in the case of the latter.
Although I am not a scholar when it comes to medicine, as I have been told by more than one physician, in the past year I have learned a thing or two about Lyme disease. For starters, is Lyme here in Ohio? You darned bet ya. Did our daughter contract the disease hiking the woods in Wayne County or on one of our hiking vacations? We’ll never know. According to our doctor, Charles Ray Jones, M.D., the top pediatric Lyme specialist in the U.S., his 8,000 patients are from every state. How has Lyme spread from the eastern seaboard to points west? Migratory birds and small wildlife, not to mention deer, of course. In other words, get rid of your bird feeder and don’t encourage wildlife into your yard.
Let’s get real, folks. Highly endemic Pennsylvania reported 250,000 CDC cases of Lyme in the past 10 years. Unless there is a big red fence that somehow prohibits those ticks from being carried only one county away into Ohio, we must face reality.
I guess it all comes down to being informed. And not stopping until we are satisfied that an answer has been found. An answer we know to be true. And then getting down on our knees and begging God to let our child know health again. To go to dances with her daddy, and laugh again. And then begin to believe, with the grace of God, that she can once again be well.