The visit to the Tidal Basin was slow and short, but absolutely perfect. We parked behind the George Mason memorial and walked...ever so slowly...down to the water. We sat on a bench for awhile and then walked up to the FDR memorial. The times we've been down there before we've almost circled all the way around. Two days earlier I'm not sure I would have even made the drive much less have been able to walk. Of course, today, after the trip home yesterday, I woke up feeling like I'd been hit by a truck and then stomped on by a 326-pound Sumo wrestler with a grudge.
Here's what I'll be doing until they change it up again which, at the rate I was going before I saw a change, will be 6-7 months.
Finish Merrem, Diflucan you currently have on hand then will discontinue. (Both of these are the IV meds I've been on since the beginning along with Clindamycin.)
Following week add in Mycamine IV (replaces the IV Diflucan)
Continue Nystatin (I've been on this since May. I take 2 million units per day. Yes...2 million is correct.)
Will add in IC Azithromycin (replaces Merrem) will do daily for 7 days then reduce to Monday-Friday. (I've been taking Azithromycin 600mg orally since May along with Mepron in a cycle of 21 days on, 7 days off. The 7 days off I took Tindamax.)
Will finish current cycle of Mepron and then discontinue it for now. (I've also been on that since May. It's what I call "Liquid Gold" because it can cost up to $1,300 for 40 doses. I was taking 2 tsps. per day, so that's 20 days, BUT...it's so thick, like tempera paint, that you can't get a full 20 days out of it. Not to mention, it tastes absolutely foul.)
Will continue Clindamycin but reduce to Monday, Wednesday, Friday. (I've been infusing this twice a day Monday-Friday since August.)
Tindamax you can discontinue unless you get a new tick bite. New tick bite take 2 pils all at oce then twice per day until you contact the office. (I don't even want to think about a new tick bite. It makes me sick.)
Once you have been on the IV Azithromycin for a week will add in Myobutin oral one at bedtime.
Will stop Minocycline when you add Mycobutin. (I've been on that since April. It is a ~cycline drug like Doxycycline which is what it commonly used for Lyme. My Lyme team finds there are better results with this one.)
They also added Ivermectin which is a topical med for some weird bumps I've had come up. There are 3 linear scars on my chest near my PICC line which they found intriguing. They think it's some of the bacteria working its way out. I've had these before. They hang around forever and never heal.
Also, I'll be taking Valtrex to increase my viral load.
If my mannose-binding lectin drops below 500, they're going to start me on IVIG which is an intravenous immunoglobulin treatment.
So...I can expect some big changes. What are they going to be? I don't know. I could get very sick again and not be able to do anything for weeks at a time. I may be fine. There could be any number of things that could happen. I'm not going to know if or what they are until I start the new meds. Each one is started a week apart. That way, if I have a reaction or anything strange going on, we can relate it to that med and which infection the mechanism of that med is targeting.
They want me to get a live blood smear done. What luck that there's a lady here who does those?! People drive from DC here to get it done. That's a plus for me. She'll spend 2-3 hours with me looking at my blood under a microscope and have it on a TV screen so I can see it. She'll video it, so I'll have a copy of it that I'll probably post here. I wish I would have known about it before I was almost a year into treatment.
Anyway, as Deepak Chopra says,