It was about a year ago this month that I was bit by the tick that gave me Lyme Disease (and possibly a second parasitic infection). Even though I've had plenty of time to process it, I still can't believe I got this disease, particularly from a teeny weeny bug barely big enough to see that bit me in my own backyard.
Having this experience has been surreal in so many ways. I have always been fortunate in having good health, and my experiences with the medical system had, for the most part, been sporadic -- isolated things, like strep throat, that could be dealt with quickly. But Lyme Disease has eroded my faith in the medical establishment. The medical establishment told me my symptoms would clear up in a month with a low dose of doxycycline, and they didn't. My internist wouldn't even give me a follow-up appointment to discuss the fact that I, a 41-yr-old person with no other medical conditions, still had characteristic symptoms of Lyme, like shooting joint pain, that I had never had before. Perhaps I was naive, raised on Marcus Welby and Medical Center, but the fact that so many doctors could turn their backs on so many patients, that they could say "it's all in your head" and refuse to treat people in obvious suffering has been disillusioning.
It's not just feeling disappointed in people who were supposed to help me but refused to. It's also feeling at sea, not knowing where to go for real information or sensible advice. I know what I feel, and I don't feel like I did, but after a year of feeling crappy, I'm starting to forget what it was like to feel like me. I think I'm pursuing a sensible course of treatment with a good doctor who knows a lot about tick-borne diseases, but a little part of me is bugged by the fact that so many other doctors, considered "experts" in infectious diseases, pooh-pooh what I'm going through and suggest that the treatment is unnecessary. Maybe I'm just getting old fast. Maybe I'm doing more harm than good taking antibiotics. Maybe it is all in my head.
And then there is the fringe of Lyme patients (I'll admit it; I think of them as the "lyme nuts"). People who turn to remedies that strike me as bizarre, like $3000 machines that supposedly beam certain radio frequencies that kill the spirochetes or who have way-out conspiracy theories (e.g. Lyme was created by evil scientists working for our government who released the germs to harm us all). Do I need to remove all dental fillings made of amalgam and replace them with pure gold? What about coffee enemas? (Nope, I didn't make that one up. Didn't try it, either. I have a fondness for hazelnut coffee, and I don't think my ass should smell like praline.) The concept of the "herx", or Jarisch-Herkheimer reaction, a phenomenon well-documented in other spirochetal illness and sworn to by many Lyme patients. Is herxing for real? Or is it a quasireligious concept, almost a hazing ritual, the fictional notion that you have to suffer in order to feel better? And how can I tell the difference between the fringe and the genuine anecdotal experience of fellow patients?
I saw my doctor last week and he decided to shift course a little. He's always wondered if I had a second tick-borne infection that is co-existing with the Lyme, and we decided it's time to try treating that. I think he may be on to something, but I guess we'll have to see. The new meds are knocking me on my ass, though, so if I seem dopey, or absent, or absent-minded, hang with me. I'm hoping that I won't be observing this anniversary ever again.