I have not been on here yet again in a long time to give an update. It got so hard to type up a review of my life. The basic jist: I started with double vision along with worsened symptoms which was an all new low. The doctor decided that since I was basically to the point of being forced to stay home, not drive, not work, not do anything and suffering such worse symptoms it was time to treat more aggressively again. We decided to go with the port to avoid the clotting I faced with the PICC line and treat as aggressive as possible. I am on IV Zithro and Vancomycin right now. The Port placement is an actual surgical procedure. The create an inch incision with a pocket under the skin where the power port is placed, the line goes up over your collar bone and another incision is placed where it enters the jugular vein and then proceeds to the top of your heart. I am still healing a week later, slight discomfort from the tub over my collar bone which is visible. I had many complications with the procedure. The sedation did not work, I was wide awake, the Lidocaine did not work, Sensorcaine helped, I developed a histamine reaction to the radiation and was throwing up and red and itchy after the procedure, which Benadryl and Zofran helped. Now I am home and was hooked up to 8 hours of IV medicine yesterday, but we are working hard to manage that and get it down to a few hours a day. The needle which is inserted through the skin and into the port box underneath the skin stays in for the 5 days during the week goes in on Monday and out on Friday. Blood is drawn on Thursday, and Medicine runs multiple hours for the 5 week days. People have not been understanding of how home bound I am, but its not just being on IV medicine and having a port in that keeps me home bound. I Simply do not feel very well! I will still be trying work on Friday and Saturday night, and I will be able to get good showers in Friday nights and Monday mornings. This is y life, IV medicines, still on Oral Meds, constant nausea, double vision, unable to drive, stuck home during the week, and all trying to keep my head up.
Hey Elaina,
ReplyDeleteI Am a 29 year old with Lyme, bartonella, and choreoathetosis. I just had close to 2 years without antibiotics, and very few symptoms. I just wanted you to know that I've been there, without the accent, but a lot of the other symptoms you have are the same as mine. You will get better. Best of luck to you :)