Ending IV Therapy: When is Enough, Enough??

IV therapy was a long haul and now I am ready to tell you how it ended. Not to spoil the surprise, but I am doing great now on orals. Let me catch you up to where I was from my last post.

Week 28: Drug Holiday

This was hardly a "holiday." I had been off Babesia treatment for a couple of months and during this week I relapsed. How did I know? Easy, the headaches from Babesia are the worst headaches in the world, at least in my world. I liken them to an axe assaulting your skull over and over again. In addition, night sweats reemerged. From my experience I can tell you that Babesial sweats are heavier, wetter, and more diffuse (they occur throughout), as opposed to Bartonella sweats which are lighter and mainly in the chest. If you are reading this and having significant night sweats and headaches- get on Babesia treatment ASAP, even if tests are negative or pending. Like I always say, if you are very ill chronically from Lyme you have all co-infections and even the co-infections no one yet knows about. And treat for these even if your tests are negative!

I restarted Malarone and Azithromycin and though initially my symptoms worsened, within a day or two, the headaches and sweats stopped. Dr J suggested that I continue pulsed (M,W,and F), high dose Malarone (4 tablets twice daily) with Azithromycin, (500 mg twice daily, and Artemesinin (1000 mg twice daily). Yes, I know pulsed therapy for Babesia is controversial, but I have come to see it's value, but that's another post.

Week 29: IV Levaquin/Meropenem and oral Rifabutin

This drug combination is a pretty intense Bartonella treatment. I was able to function but developed hyperactivity, insomnia, and OCD, in addition to a lot of nausea and reflux. Initially I felt my GI symptoms were side effects from the medications, but since I have come to realize it was all probably due to Bartonella die-off. Bartonella causes a lot of (varied) gastrointestinal complaints, including fullness, bowel changes, abdominal pain and nausea.

What ever the reasons, I grew certain that my IV should come out. I was done. I had done enough IV treatments. And so with my plea to Dr J to, "stop the train," my PICC line was removed, 337 days after placement. Uneventfully and easily within one second the line was out and in the wastebasket.

I was not cured and back to normal but I was better than I had been in years. When my line was first placed I could not add numbers, collate papers, follow recipes or shopping lists, help my 11 year old to school, control my emotions, or feel happy to be alive. I had horrible dental pain, and a frozen shoulder. All of these limitations were now gone or just about gone. When the line was first placed I had felt completely hopeless and lost. The day it was removed I knew I would conquer this disease fully.

The day my PICC line was removed I boarded a plane for Florida and jumped into a swimming pool! I went to crowded restaurants, and shopped (with a tween), in noisy stores. What a difference a year of intravenous antibiotics makes.