Guest post by Doug M, New York State.
Lyme disease continues to amaze me with its astonishingly varied and complex combinations of symptoms. Perhaps it might be helpful if I described my own journey.
I first complained to my doctor in 1988 about shoulder pain. “Bursitis” he said, and wrote it in my record as a “complaint.” Over the next few years I complained of swollen neck and throat glands, sore throats, one-sided headaches, all of which lasted from a few hours to a few days. “Coxsackie Fever,” he pronounced once, but denied saying later. Back and rib pain, a knee that swelled up overnight, sores on tooth margins, tinnitus. What a menagerie of complaints! A frustrating aspect of these complaints was that they kept moving around — head to neck to ribs to back to hip and back up the to the head again. Multiple CDC ELISA and Western Blot Lyme tests allegedly showed that I was negative for Lyme, though in retrospect I think that was the lab’s skewed interpretations that the doc believed unquestioningly.
Stir into my symptom mix sensitivity to light, random muscle spasms, day and night sweats, foot pain, and increased eye floaters. I did try another doctor, who lectured me on the unlikely possibility of having Lyme. Finally in 2002 I went to an LLMD who catalogued my symptoms, repeated the tests at a more competent lab, and ruled out other diseases that Lyme mimics. “Lyme,” she eventually announced, with possible Bartonella. Fortunately for me my Lyme disease symptoms, compared to others in her waiting room, were relatively mild, not disabling but very annoying. What sent me into treatment was the prospect of these symptoms getting progressively worse and irreversible — a possibility, not a probability. But still.
Since 2002 I’ve had four courses of antibiotic treatment, one lasting only a few weeks, another lasting a year and a half. I’ve had a total of 330 daily IVs, some just Rocephin, some with Zithromax as well. I’ve used eleven different antibiotics over these nine years. I’ve also been “drug free” for as long as two years in between. The symptoms can be beaten back; I’ve enjoyed significant relief for months at a time. Complicating things now, though, are complaints that have as much to do with aging (herniated discs, arthritis) since I’m now Medicare eligible.
Over the years my Lyme-literate doctor has developed a construct as to which symptoms, in which combinations, signify Lyme, which suggest Bartonella, Ehrlichia or Babesia, and which antibiotics or combinations of antibiotics might be effective for each individual patient. She also carefully monitors my liver function and other parameters on a bi-weekly basis. Our doctor-patient relationship seems to be working quite well, to the benefit of my health and well-being.
While I may never be completely symptom free, at least I know that I can deal with the symptoms when they return and beat them back when I need to. Lyme disease is such a complicated illness, but it is manageable if you have a doctor who knows how to tackle it over the long term.
For an excellent book on diagnosing and treating Lyme disease within one family, I highly recommend Cure Unknown: Inside the Lyme Epidemicby Pam Weintraub. It’s written like a detective novel as well as a documentary expose.
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