January 14, 2009


I am now on Day 5 of Rocephin and today I added in my second IV med.
IV Zithromax.
I am currently piggy backing the meds. I start with Rocephin which takes 45 minutes to administer then I flush my line and start the Zithromax which takes 60 minutes to infuse. All in all, the whole process takes about 2.5 hrs each morning.

I was actually feeling pretty good today after running my first dose of Zithro. Good enough to drive over to my folks house to pick up some suitcases (we are leaving on Friday for San Fran to see DR H ). I was so happy to be feeling so good. And then a mere 6 blocks after leaving my mom and dad's I got hit with a migraine. I have major visual disturbances when my migraines begin so I had to immediately pull over. I called Graham to let him know I would be delayed. He urged me to call my folks and have them come and get me. I knew they'd happily do it in a heartbeat however I was so upset at having to endure another migraine ( this is my 2nd in the past 5 days) that I knew if I saw my mom I'd just be a big bawl baby. So I chose to just wait it out and then push through with the rest of my day once my vision returned.

I have had 6 migraines in the past 30 days and only re-started treatment 5 days ago, so I can't really blame the IV meds for my headaches. I'm not entirely sure what is up with this sudden crop of migraines - sure glad I'll be seeing DR H on Monday and can pick his brain about it.

Maybe my IV meds aren't a literal headache however they are a great big figurative headache.

We have spent most of this week and a bit of last having to deal with the tangled web that getting set up on IV entails.
Initially, when I started IV under American care we had a steep learning curve. We faced many challenges and difficulties just simply filling the prescriptions, finding suppliers and pharmacists, learning how to re-constitute meds ourselves...the list goes on and on. It is always a lot of work, overwhelming and stressful. But, thankfully, it is now less stressful than it was when we first started out. After a lot of trial and error and tons of phone calls, we have finally found some amazingly compassionate and caring pharmacists and pharmacies. However, the landscape of Lyme is ever changing. The minute you have finally figured out where to get this med and how to re-constitute it, your treatment changes and you are back at square 1. The whole song and dance begins each time new meds are prescribed.

This time around has been no exception. While the Rocephin is not a new med for me to be on, prior to this week we had never had to re-constitute it ourselves. We had to learn how to do that this week. In addition to that, we had to learn how to infuse the Zithro and had some challenges getting the Zithro rx filled because there was a shortage of it with the pharmaceutical suppliers.

Then there is the IV med Storage Headache! Re-constituting the meds ourselves is the most cost effective way to administer IV but it means that our home is beginning to look like a mini-pharmacy.

The Storage Headache:

This is a ONE month supply!


Some how we survive.
My literal headache is still raging on.
However the IV headache is now contained and the ball is rolling.

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