Eight years, 25 doctors, no diagnosis. Five infections missed. One immune system, shattered. Five years in treatment. Two years of IV and needles, daily. Forty medications, 20 supplements, 8 alternative therapies. One retirement plan, depleted. Thirteen years of life passing. Mostly recovered but mainly managing. This is Lyme Disease. This is my story.
Hello Monday 183/365 I think this is a crocus flowering shrub. But I can't be sure. I do all my uncomfortable Lyme stuff on Monday's like, new IV peripheral lines or shots. This month I've been back on bicillin shots in the butt twice per week. It's a lot like getting a shot of elmers glue in […]
A Foxtail Lymegraine 179/365 Yesterday's Lymegraine felt like a thousand foxtails stuck in my brain, in my cheekbones, ears and jaw, then lit on fire. But I still find joy in making photos like this. If you'd like to help people with Lyme disease, and can't donate to ILADS or another Lyme and Tick disease […]
Accidental Magic 174/365 This is not one of my more well-received photos on Instagram. One person even commented "huh?" It was an accidental shot, but I liked it. It's also a great representation of what it's like to have Lyme brain, which has been a little bit more common these days. Things are foggy, unclear. I make […]
It's been a strange week. After a visit with my doctor, we are giving one last-ditch effort to get rid of the Babesia for good. It's been hanging on much longer than it should. We've been treating it since September of last year, which is a long time to treat this infection. He doubled my dose […]
A reader wrote in recently in regards to fighting Lyme. She wrote, “I’m full of fear. I admire your courage and energy.” Energy? Really? Every day I have to drag myself out of bed and muster the energy to do the dog walk. That is usually all it will take to wipe me out. The […]
It's been two weeks off the IV meds and one of the strong oral meds for Babesia. I thought being off the IV meds would help me bounce back to my normal Lymie self, but I was wrong. I'm still rediculously exhausted and don't do much beyond walking the dogs. These past 10 years, July has […]
I haven't been to the ocean in a while. I tried several times when I started treating Lyme, but the sun and the reflections off the water set off my neuro symptoms so badly that I've avoided it for about a year now. An odd thing about having Lyme disease is that you don't miss things […]
This month I marks two years since the beginning of my treatment for Lyme disease. I'm astonished how much the body can take. I just finished a six-week course of IV Daptomycin (Cubicin), a new drug being used for Lyme disease following a successful study done on drugs that help eradicate it completely. Words can't explain how thrashed […]
I dodged a bullet yesterday. I had an ultrasound to re-check the DVT caused from a PICC line I had in March. The clot had run the length of my arm and part of my chest. It was resolved. As in: gone. Kaput. Vamos. My vascular doctor did not order the re-check. In fact, on […]