January Part 14 – New Protocol With Dr J

Thursday night Dave and I were Boston bound to fly out to DC first thing in the morning for my appointment. It was another 4 a.m. wake up call, but after all the excessive running around I had to do before leaving: packing, a little cleaning, my dressing change and paying bills at the hospital, going to the pharmacy, and dropping my dog off at my parents, not to mention the trip to Boston, had me going to bed at a decent hour.. for once.

I hate 4 a.m. I actually faired better than I thought I was going to after this holiday week, but my eyes always get so dry, and I still got pretty light headed. We got to the airport a little early, so of course I forced Dave to take a photo with me. As you can tell he was pretty excited about this…

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We had enough time to grab a cup of coffee and then headed to our appointment. Thank goodness I allowed enough time until we had to be back at the airport! They were really running behind! Maybe the weather last week had something to do with it? Anyways… I did not have to try any new IVs this time around. I was pretty nervous, since I knew I didn’t exactly have the best month, and I had a few questions I needed to ask him. About the “seizure” on Wednesday, the bumps on my arm and back, about CRPS, and of course if he thought I was still going to be able to get my line out with two more protocols.

After discussing some of my notes, my prescriptions, and supplements with one of his assistants, he came in to talk about how this past month was. I told him everything. The numbness, the pain, the crying, the lightheadedness, my marks on my arm and back, the seizure.. anything that came to my mind.

I showed him the mark from one of my bumps as well as pictures of them, and Dr J said that was a Bartonella flair. Okie dokie. Cipro is a primary Bartonella fighter, so that would probably give it an explanation, especially since I got these bumps during my IV Cipro and Meropenum week.

My second question was about Wednesday’s “event” (read my last entry to explain if you don’t follow… you should though because I am awesome). What the hell happened? He said it was no doubt a non-epileptic seizure, or a partial seizure. Darn. That’s what I thought… He thinks also… just as I thought, that I am entirely toxic and that is probably why I had the seizure.

Dr J was pretty concerned about my foot pain, even though it is intermittent with the numbness, so he made me take my boots and socks off and feel around my tootsies. I felt kind of bad since I knew I needed a pedicure and I was wearing thick wool socks so I knew my feet were going to be..err.. ripe. LOL

YUP, THAT HURTS!!!! Dr J told me he really didn’t think it was CRPS anymore, but was now thinking plantar fasciitis, and possible effects of tendon issues from Cipro. Hmmm…. So, in order to be safe, he is cutting back my Cipro to see if there is any improvements. I will only be taking it three times this next month.

My question that I really wanted to know… “WHEN AM I GONNA GET MY LINE OUT!!!!??!!” ( I feel like I am such a whiny kid asking their parent in the backseat of the car.. “ARE WE THERE YET?!” when I asked him this. I was told I would have 3 more protocols (jeesshhh, that’s what he said LAST month!). So, another month pushed back. The main reason being, which I already knew, is that I did downright terrible this month, and I am doing piss-poor on this break as well. He knows I need a longer time, especially addressing the co-infections. Be patient young grasshopper! It is one of those things that I realize that it is a process. And I knew what he was going to say. I just didn’t want to hear it. Who likes bad news?

Dr J thinks that this next month will be easier for me. I sure hope it is. But, we will just have to see. The new protocol is similar to my other one, yet my not so favorite IV will be one of the stars of the show. new protocol as follows:

Week One – M, W, F – Septra DS 2 x day, Artimisinin 2 x day, Daraprim 2 x day, Leucoverin 1 x day, IV Tigecycline and IV Meropenum at night

Th, Fr – Flagyl and Diflucan 2 x day

M-M – Lactoferrin and Xylitol

Week Two – S-Th – IV Meropenum 2 x day, IV Tigecycline night only

S, T, Th – IV Cipro added

Week Three – M-W Coartem

I am also starting an anti-inflammatory medication called Mobic, to try to get rid of some of my foot pain, and was told to up my Lamictal and Ativan, since I am already taking maximum dosage of Gabapentin. He also suggested that I could up my magnesium, even though I wasn’t low, to see if that made any sort of a difference.

I am however, low on sodium. I was recommended dill pickles or even potato chips. I can deal with that! Both him and the nurse told me to up the amount of lactated ringers I do. I need to do them on ALL of my off days. That’s okay. Get rid of those toxins. They also recommended me to not just drink water, but could have other things, as long as it doesn’t have a ton of sugar. They said Pedialite or Propel would be some better choices for me right now. We did leave on a good note, although I ticked a bit during my appointment, Dr J told me that I did seem to be much more aware than I usually am, and to not lose hope because things are really hard right now. Don’t worry Dr J, I never lost hope. 🙂

P.S. You didn’t think you would get away without seeing my monthly thumbs up pic, did you? Just because I wasn’t trying a new IV doesn’t mean you don’t get a thumbs up!

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2 thoughts on “January Part 14 – New Protocol With Dr J

    • 🙂 Now most of it has turned into an invisible illness for me. I still have days I walk like the tin man and tic, but nothing like I use to, and I definitely look a lot less “dead” looking lol

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