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Hi, Joy. My name is Tom and I am on IV Rocephin as well. I started on February 13th, but it has been a rough go, mainly because of the PICC lines, but not horrible. I had my first PICC in until March 13th, so I got in one month of therapy. Some gunk had built up about 2 inches above the entry site and blood was backing up and out in to the bandage. Not a horrible situation, but a ripe one for infection, so they pulled the line. The second PICC was put in a week later (in my other arm) and clotted within 36 hours. My hand and arm blew up big-time, so they pulled the line immediately. I had my third PICC line put in on April 1st, and I am still going strong with it. So I am in the fifth week of therapy with my third PICC line. I am also being treated for neuro Lyme. Have I seen big improvements? I'd have to say no. I had an appointment with my LLMD on Wednesday, and we are going to stay with the Rocephin for two more months. Have I seen any improvements? Yes, but they are small. I have had some frontal neck pain diminish quite a bit, all of my jaw pain has gone away, and there has been a small decrease in my light-headedness, dizziness, wooziness...whatever you want to call it. It's not constant, like it used to be, but it's still there. My doc believes I should have had more significant improvements by now, but wants to try a little longer before trying another antibiotic, like Anceph. One thing you have to remember about Lyme, there is no standard treatment, PERIOD. It is tailored to the patient, because no two cases respond the same. It takes a lot of trial and error to be sure, but it's not hopeless. Some patients respond well to prescription meds alone. Some respond well to natural remedies, herbs and supplements; while others respond to a combination of the two (almost all the LLMDs here in Maryland treat with both). My doctor started me on low dose oral antibiotics and lots of supplements, but I kept getting sicker. In January of this year, I sent him a respectful but firm letter, telling him that I met all the criteria for IV therapy and wanted to go that way. He responded well and we still work well together. He has also decided to start treating me for babesia, because I continue to have very intense breathing problems, chest pain and neck pain. We will continue to treat the Lyme, of course, and will go after the bartonella once the babesia has been knocked out. That is another problem with each patient...which co-infection do you have, and how does that affect your treatment? Sometimes Lyme treatments won't kick in until you smack down the co-infection. The home health nurses that take care of me have patients who have had PICC lines in up to 2 years. My wife is an RN and says there is no reason you can't keep it in for long periods of time, as long as it's kept clean and well taken care of. The hospital where I have had my PICCs put in tell me they are only good for about a month, and can't believe people have had them in for so long. So.... You and I have a very similar story and length of illness, so I hope my information is helpful...and hopeful. I'm going to be better, and so will you. If you have any other questions, please feel free to send me a PM anytime, or I'll talk to you here on the boards. Think positive. Tom |
