Had my IVIG infusion on Tuesday. Everything went as usual. Two days later I started having the severe brain pressure. Every time I stand up or bend over it is a stabbing pain in my head and I can’t think for a moment. Takes about 10 seconds for it to calm. I haven’t been feeling so well since I got back from CT. I have been sleeping a lot and healing.
I took my second dose of LDI a couple weeks ago. So far I don’t notice any difference at all but I think I’m on the wrong dose. I took 13c and 12.5c so far but usually I need the high doses so maybe I will feel something on say 7c. I’m requesting a higher dose soon.
Had a lot of personal, family issues going on so I’m quiet. Hope you are all hanging in there. Never give up!
I had received a text over a month ago from my ex-girlfriend. She told me she was dying of renal failure and asked if I could be by her side and she wanted to spend her last days hanging out with me. She is the girl I always talk about and I’ve always been in love with her so of course I booked the next flight out. I had just had my IVIG infusion the day before and I have never been on a plane that long of a flight or while I’ve been so sick. But when you love and care about someone you do anything you can for them. Basically I spent a month on the East Coast sleeping in a hotel room 16 hours a day. I had to visit the ER and that a whole other story but I was made fun of and treated poorly. Had the “worst vitals” thatER doc had ever seen yet he only gave me 1 liter of saline and sent me home. Told me to follow up with my own doctor back in Cali if I needed to come back. I wanted to go to the ER 2-3 more times but knew they wouldn’t help me. I almost go into an accident in my rental car driving myself home. I was alone and had no caretakers. Too much to explain. But my ex is doing much better and is alive. She told me she’s always been in love with me and we are back together and she wants me to move with her in the next few months. I hope it works out this time she is my everything.
I went to my LLMD appointment a few days ago. The doctor still believes my mast cell and babesia are a big issue and I need to treat them. I’m going back on Mepron again soon but A-Bab for now. She still believes I have Ehlers–Danlos syndrome (EDS) and I am producing too much spinal fluid in my brain. So she put me on a new med to help my head pressure/headaches called AcetaZolamide. I will continue my LDI, Minocycline and Tinidazole for my Lyme. I will be adding LDA, testing for connective tissue disorder and to see if my H Pylori is gone.
On the ride home there was traffic and I vomited/dry heaved all the way home. My poor mom had to keep pulling off the freeway. I’m still recouping.