Most people measure out their lives in terms of events..."before I went to high school...after I got married...when my children were born." My life is divided into "before Lyme disease"....and "after".
Before I got Lyme disease, I was an extraordinarily fit 40-year-old woman. Played softball, hiked, skied, ran...had three wonderful teenage daughters...a terrific husband...a job that I loved as a labor and delivery nurse on the night shift. Something happened to completely change my health, my life, my self-image...and that something is Lyme disease.
The bad respiratory bug I got around the holidays in 1995 dragged on for a while; I got better, but the muscle aches, the fatigue, and the flu-ish feeling didn't go away. February of 1996,1 woke up to find I had gone deaf in one ear. A couple rounds of steroids (the customary treatment for sensory-neural hearing loss) triggered a strange assortment of neurological problems in addition to my already deteriorating health. Muscle twitches, numbness, tingling, cognitive problems...and I was SICK.
MRIs revealed nothing. Every blood test known to medicine (including Lyme disease) ..nothing. A lumbar puncture...nothing. In short, I was the sickest looking healthy person my doctor had ever seen. My weight was dropping rapidly, my hair started to fall out, my brain was gone. I had previously buzzed in and out of my doctor's office one a year for a physical; now I was in my doctor's office weekly, sometimes more often...sometimes having to be driven there, as I was too sick to drive.
My doctor (yes, I'm a walking poster child for the value of the primary care physician) all but turned himself inside out, and sent me to several neurologists, two infectious disease doctors, a rheumatologist, and ENT specialists (much to the dismay of my insurance company, I'm sure.)
Although I wasn't quite confidant in the diagnosis of chronic fatigue syndrome and fibromyalgia that I ultimately received, it DID seem to fit...except for the hearing loss, which all the specialists who concurred with my diagnosis of CFIDS seemed to ignore. As hard as it was to be sick, what was devastating was when my 15-year-old daughter began to develop similar symptoms a year after I was diagnosed with CFIDS.
TWO people? In one family?
Finally, late in 2000, a new onset of hearing loss in my good ear sent me to the world of closed-captioning on TV. I couldn't use the phone, I couldn't work.
Another trip to Massachusetts Eye and Ear in Boston, and the specialist couldn't explain the hearing loss... except, he said, for one case of hearing loss like this that he had seen in Lyme disease.
That was enough for me. A referral to an infectious disease doctor (an LLMD) in December of 2000, eight weeks of IV Rocephin, months and months of oral antibiotics... and I finally have my life back. The improvement has been slow... there have been a few mild setbacks, but now, five and one half years after the onset of symptoms, a year and a half after the initiation of antibiotics, I'm working full time, going to school at night, playing softball, skiing, and beginning to get my life back.
My doctor told me at the beginning of treatment that nobody ever recovers 100%; most get 50% better, a few never get better at all. On rare occasions, a 90% recovery occurs, and that's about where I am. I'm still on antibiotics (Ceftin), have some lingering neuro symptoms, but I don't consider myself "sick" anymore. In fact, there are the few blessed days every month where I feel totally normal.
Its been a long, hard road, but one that's being traveled by many others right now. Were it not for the support of my husband, family, and friends, and for the persistence of one very special primary care doc (to whom I truly owe my life... thanks, JPH!), I don't think I'd be here to tell my story.
Lisa L. (MA)