This past week has been one of the hardest in a while. Started out with a good visit to the Lyme doc in the Bay Area, a trip that doubled as girl time with my daughters. Came home and crashed hard. Stabbing pain in my neck and head was unbearable. Hands and feet were numb…
A Christmas State of Mind
Christmas has forever been my favorite time of year. An old poem says "Christmas is not a date on a calendar, but a state of mind". I love the way our home helps to bring that state of mind with warm decor and colorful lights. I love preparing gifts for family and friends. I…
It’s OK to Hurt
It's ok to hurt. It's ok to be sick. My husband says these things often. Not because he is ok with me being in pain or being sick - he is reminding me that what I am feeling is real. Even as I lie here this morning with severe muscle pain and feeling like I…
Update: July 22 2016
At my last in office appt my doctor told us about a recent study at John Hopkins which combines multiple IV abx to attack various forms of Lyme. Doxy is a key one but I was on that last year and I did not tolerate it so that's out. I've been on rocephin for a…
Update: June 28 2016
After stopping IV for a month, the pain became too difficult so we resumed 1 of the antibiotics. It has helped some, but I am still struggling with head, neck and back pain - among other miscellaneous issues. Symptoms currently are more indicative of bartonella and babesia so those become the primary treatment focus. John…
What’s It Like?
It's impossible to explain what it's like living with Lyme. I've seen improvement from where I was 3 years ago, but I am still much worse than I was 10 years ago (when we think I was infected). So it's really hard for me to call it improvement, but in the interest of hope, I…
Fight
Well I am about 10 days into the parasite protocol and I'm still alive, so that's good then, eh? (For whatever reason, my mind is thinking with a British accent / not proper British English, just a play on American English with an occasion twist of words. I don't know why, but play along, won't…
Treatment Update: Parasites
The mold treatment has been very effective. My C4a levels dropped from 18,800 to just under 3,000 (not quite normal, but close enough for now). I had a couple of pretty good weeks, followed by a massive crash that we believe is due in some part to parasitic overload. I am continuing treatment for the mold, but…
Prognosis?
I am asked every day about my prognosis. Here’s the deal, chronic Lyme disease doesn’t have a prognosis. We literally take on this illness one day at a time. When I discuss my progress with my doctor, I am constantly reminded that I have been sick a long time (9 years) and that it’s going…
Strange Things…
...like the feeling that a long, fat needle just stabbed me in the heal of my foot and is lodged deep into the bone.
PhilippiJoy 