Life With Lyme
"Pain is a monster...24 hrs a day it questions... "How much do you want to stay here, how much do you want to live?"
Twice Bitten Several weeks after finding a nymph tick in the crook of my arm after a wonderful early spring hike with my husband I started feeling like I had been hit with the flu - on steroids. My husband was exhibiting the same symptoms. He headed to the doctors and was promptly prescribed the standard antibiotic doxycycline. I headed into the very same dr office and was met with disapproval and doubt... "Well, you know, you're getting to that age. Could be arthritis". "But you just diagnosed my husband with Lyme". I was being patronized and dismissed. I walked out near tears and furious, resigned never to use that practitioner again but still feeling "off".
Flash forward a few more weeks and I am in bed racked with feverish pain. A quick trip to the local walk-in clinic confirms I have Lyme Disease and Babesia. No bullseye rash but a hefty dose of antibiotics, and an anti-malarial for the Babesia. All is well and Life goes on until....
It's about 15 months later and I get that same "hit-by-a-bus" unease. Nothing concrete until about a few weeks before a European vacation; my leg muscles are twitching non-stop as if I just ran a 5k race. A new internist refers me to a neurologist but never questions any other cause. The neurologist reassures me I don't have MS or Parkinson's (phew!) but when asked if it could be related to my prior case of Lyme, he shrugs, tells me to exercise and come back in 6 months (?!).
Another month or two passes and I can't shake the fatigue and develop chronic low-grade fevers but no one will test me for another possible infection. 4 doctors later, I find a Lyme literate MD who tests me for everything he could throw at the lab...I have Lyme again coupled with Q Fever and mycoplasma pneumonia.
Because so much time has been wasted on getting a diagnosis, the Lyme is now chronic...possibly for life. Vision problems, neuropathy, muscle cramps and joint pain that Yale dr's shake their heads at. A large part of the medical community denies the idea of this disease being chronic and wave it away as "Post Treatment Lyme Syndrome" with no solutions.
I'm on my own, left to deal with the struggles and subtleties of Chronic Lyme that no one, not even doctors can quite understand.