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.
Up in the Grill 362/365 Friday I went for my first IV IG infusion treatment. Since it's a blood product and risky, the nurse has to monitor the patient's vitals and symptoms every 30 minutes. It's about 4-6 hour drip depending on how the patient tolerates it.
Early Cherry Blossoms -356/365 CVID, Common Variable Immunodeficiency. Another fallout from complications due to Lyme disease. When researchers say Lyme disease is AIDS-like, this is what they mean. Basically I don't make antibodies as a normal person. Researchers don't know the exact cause, but think it's partly genetic and partly from opportunistic infectious disease. My […]
Even Computers get Lyme Disease - 344/365 "It's as if there is some bug so deep in your PC that no virus program can find or fix, and it gets carried over to each new PC you get," said MWD about my latest technology drama.
Wine Goals - 335/365 "My number one goal is to get my patients drinking again," said my Lyme doctor.
Progress - 323/365 I didn't want to say anything for fear of jinxing myself, but yes, I'm back on the yoga mat. Over the last 3 years I've been on and off the mat, not able to maintain a consistent practice because mobility was just too painful. Last year, I gave up asana (moving practice) […]
BLT Canapes for Appetizer Night - 313/365 "What do you want for New Year's Eve dinner," I asked Mr. Wild Dingo. "BLT's," he replied. So I made these bad boys: BLT Canapes with basil and garlic mayonnaise. They are a bit tedious to make but super simple and oh so delicious! We tend to do […]
Absence of Evidence is not Evidence - 289/365 Each day I walk the forest trails in back of my house and I inevitably walk through 1 or 2 strands of errant spider webbing. It's impossible for anyone to see it, but I can feel it on my face or bare arms in the summer. No […]
Leaf - 281/365 Recently, I started calling my chronic illness Lyme-MSIDS, a named coined by Dr. Richard Horowitz who's treated thousands of Lyme patients successfully. Lyme-MSIDS stands for Lyme-Multi-System Infectious Disease Syndrome. The reason Lyme patients don't get better is because there are more things at play such as co-infections, immune dysfunction and multiple systems in the body, […]
First Slug of the season 273/365 This month has been all about slow progress. Some of the symptoms that returned, the lower body pain and feet pain, have slowly decreased. They're not gone but they're not as bad as they were. That's just how it rolls in treating Lyme disease. Sometimes you make huge gains and […]
Non Sequiteur - 259/365 Lyme-MSIDS is the most depressing game of whack-a-mole ever. Goodbye migraines, fever, chills, POTS, dizziness, fainting and shortness of breath. Hello again lower body pain, numbness and soles of the feet pain. Getting difficult to walk. Bartonella, we meet again. You rat bastard.