A look inside the complicated politics of Lyme disease.
Go figure. Studies that acknowledge neurological (statistically untidy, invisible) symptoms find the rash a less frequent star in a constellation of symptoms.
There's a window. Twenty percent of people with chronic Lyme--people who weren't treated early enough or with a sufficient amount of antibiotics and are still exhibiting symptoms and still have bacterial spirochetes digging into their bodies--will never recover, no matter what treatment, after a time.
When a friend diagnosed me with Lyme because his mom had similar symptoms, I made an appointment with my primary care physician and requested the tests.
They came back positive, but my doctor said I didn't need more antibiotics.
After 49 days out of work, I returned to the office. I was still exhausted, but my disability insurance had rejected further disability pay because, as they told me over the phone in response to the packet of documentation I provided, it appeared that my "visits with the doctors were social."
When I got back to work, my coffee cup and pens and things were exactly as I'd left them, except I could barely stay awake for the commute.
Bell's palsy is half-facial paralysis that afflicts approximately 8 percent of those infected with Lyme disease. Half-paralysis doesn't mean your face is normal on the "good" side. When you laugh or cry, the energy that can't release through the paralyzed side explodes across the working side. It looks and feels wrong. It's hard to eat and you can't purse your lips together after a slick of gloss. You can't kiss.
The right side of my face looked like it was sliding off the bone. My lips drooped into a cartoon frown. With the condition, tear ducts on the paralyzed side either constantly water or stop producing tears, so you either have to wear a patch to keep your eyeball from drying out, or a steady stream of tears trickles down your cheek. It's a humbling, hot mess.
When I went to the neurologist in July, he said my primary care physician was crazy to not have prescribed more antibiotics. Lyme likes to settle somewhere, he said, and it looked like my little spirochete army was settling in my brain. He said I risked dementia in years to come if I didn't have sufficient antibiotics.
He prescribed a month's worth and ordered an MRI, the one that showed the little ghost in my skull. He tapped on my knees with the little hammer to check my reflexes, which he said were fine.
I won my disability pay retroactively. I sent a whole new packet of documentation. This time with pictures.
Friends say they don't notice a difference in my face anymore. But I can tell. When I'm stressed out, it feels like a baby's fist is wedged into my cheekbone. The area beneath my left eye randomly goes purple so it looks like I was punched, which feels about right.
I've had my days feeling sorry for myself. It was no fun deciding whether to cancel my wedding. (I didn't.)
All that's just surface, though.
It's the invisible effects of chronic Lyme disease that matter most. The days I can hardly think straight. My short-term memory is shot. I've always been a distracted cereal box-in-the-fridge sort of person, but we're talking about rerenting movies, and forgetting what errands I ran in the morning.
Alan MacDonald, a leading Lyme researcher and doctor, has discovered connections between Lyme disease and Alzheimer's.
Sometimes I can barely get out of bed. I'll be out cold for 16 hours at a clip, and when I get up it feels like my muscles are filled with wet sand. In my house, we call it the sober hangover.
Jesse has chronic Lyme too. His knee blew up a few weeks after I returned to work last year. Now his knees and elbows blow up every few weeks. My neighbor Loretta has it. And my friends Raph, Jack and O.J., and Sara's mom, Beth's mom and Devin's mom, dad and brother. And Lucky, the dog downstairs.