I have been inundated with life events, but have not had the energy to type most of them out. Such a separation has happened between me and the health I pictured for myself for so long, in more ways than one. So a quick update on some things that have happened, and then more about what I hope is to come. Deep breath...
When Em's tests came back positive and the three or four days of total devastation/relief I allowed myself had passed, the smoke settled on something more awful, something I couldn't wrap my head around: My husband did not fully believe the test. Now, over the last several months I have filled him in on Lyme and its controversies but I'm not sure how much he really understood. I'm not sure how much he's researched and read on his own and how much of it he really believed. One thing was clear though: he did not think the bicillin shot (especially since it was so strong, not to mention expensive) was the best way to go for Em's treatment. So we scheduled her an appointment at a very popular children's hospital in the Kansas City area and met with a doctor there who seemed willing to treat her (even though she did not have the five positive bands that meet CDC criteria). I tried to be hopeful over this appointment, though I knew what would happen. And happen it did: This doctor downplayed each of her symptoms; the cyclical fever and vomiting since babyhood, the joint pain, the rashes, the sudden onset of eczema and allergies at the age of seven. "Those aren't symptoms of Lyme," he said. When I asked him if it was possible Lyme disease was lowering her immune system to the point where she was picking up every "bug" that came along (hence missing weeks and weeks of school and having strep throat three times in four months) he actually said, "There is no medical evidence that Lyme lowers your immune system."
Choking back an incredulous laugh, I snipped, "I'm sorry, I don't agree with that. You're telling me a spirochetal bacteria (just like syphillis) doesn't lower your immune system when you're infected with it? You're telling me I haven't ran a fever since 2003 because my immune system is working properly?!"
A few days ago when all her tests came back "normal" as I knew they would, I asked the nurse how many positive bands were showing on Em's Western Blot. "I'm not sure what you mean by that," the nurse said. So she probably also didn't know what I meant when I screamed, "Respected Children's Hospital FAIL!"
Meanwhile my husband's Lyme test came back with one positive band, but some doctors feel one is enough. I know my husband has bartonella; the signs and symptoms are all there, not to mention that I have been dealing with it as well. I've been suffering from horrible chest pains that feel like a spirochete drilling through my heart muscle; I've started taking Prozac again and have been downing the Xanax like candy. None of this has been helping much. My anxiety is tolerable, but my Lyme treatment and my daughter's treatment is on hold; my husband's is currently nonexistent. Lately I have felt the need to do something drastic; the kerfluffle over healthcare reform and the look of stupidity bestowed on me by each and every doctor I visit has caused a rift in my space-life continuum. My stomach has been in knots for two months and I can't keep anything under control in this house. We're overrun by brown recluse spiders, there's clutter everywhere, I have no energy...I just know I can't go on like this. So that's why what I have been planning must happen. And don't get excited; it has nothing to do with burning anything down or doing anything remotely postal to anyone else. But it is the path many a Lyme-laden sap has taken when the world of modern medicine gives us a pearl necklace. And it is frightening, but we all know it has to come to this. That's right, motherfuckers. I'm going holistic.
