I had Lyme disease a number of years ago, but my idiot doctor used an outmoded test when they were trying to figure out wtf was wrong with me, so I scored a false positive.
It went untreated for nearly a year after the onset of symptoms, to the point that it began to affect my brain. They thought I had MS.
The neurologist I was seeing wanted to try me on meds, so he ended up referring me to a colleague who specialized in it. The MS specialist did some fresh bloodwork straight away — he never expected to find anything — and that’s how they finally figured out it was Lyme (along with a co-infection).
I knew a nurse whose daughter wasn’t so lucky. She spent 10 years being medicated for MS until she had to move up north to live with her mother because she was no longer able to take care of herself, let alone her child.
Naturally, she needed a new neurologist. The new guy realized right away that something didn’t add up, and they eventually ended up suing that first doctor for misdiagnosing her Lyme as MS.
I don’t know whatever came of the suit, but the woman’s life was permanently ruined — moreso by the MS drugs that the Lyme.
She was around my age. Her son was around my son’s age. 🙁
Here’s the real kicker:
They put me on a PICC line for three months, followed by a year of oral doxycycline. The co-infection cleared up almost immediately, and I was seeing significant improvement by the time I’d switch over to the oral.
After a few months I plateaued, but I wasn’t particularly concerned. It can take time for the symptoms to subside even after the initial infection has been treated, and mine had gone untreated for a significant amount of time.
I was eventually diagnosed with Post-Lyme Syndrome (symptoms without an active infection) and told it could last anywhere from a few months to a few years.
I decided to seek a second opinion with a rheumatologist. She basically just reinforced the PLS diagnosis and told me to be patient. I was until I started getting worse, and I became convinced that whatever was going on with me didn’t have a damned thing to do with the Lyme. It felt different, but no matter how much I insisted, I couldn’t get anyone to listen. Infectious disease specialist, neurologist, rheumatologist, orthopedist — they all just kept reinforcing each other’s opinions and (I shit you not) reminding me that Dr. X, Y, and/or Z had been named among the area’s top doctors by Washingtonian Magazine. 🙄
Not one of them was willing to even question whether something else could be going on. I didn’t really have any theories either, and I am not the sort to self-diagnose anyway. (I’m more the skeptic.)
But the ONE THING I kept requesting was an x-ray of my right leg because I had been limping around for the past two years and it had gotten progressively worse. Yet even that they denied me (the rheumatologist and the orthopaedist), insisting there wasn’t any need. When I tried appealing to the neurologist, he told me I was “focusing too much on the symptoms” instead of on treating the cause. He sent me back to the infectious disease specialist, who decided I needed another round of IV antibiotics despite not having an active infection. 🤦🏻♀️
Just a few days before I was scheduled to get another PICC installed, I slipped on ice, banged my knee, and shattered my femur. Turned out I had primary fucking bone cancer, but my Washingtonian doctors had their heads so far up each other’s asses that they wouldn’t even condescend to grant me a simple x-ray.