December Part 12 – New Protocol With Dr J

4 a.m. sure did come quick. I was happy that I took a shower with one of my AnchorDry patches and washed my hair the night before. I highly recommend them for all you IV patients. I did a quick face wash, put on a little makeup, slapped on some deodorant, and got dressed as quickly as possible. I was ready to rock and roll!

We were stuck on the terminal for over an hour before take-off, but that is exactly why I booked an earlier flight! Of course while being stuck on the terminal, we had to do a selfie. 🙂 As you can tell by my eyes, of course with a hint of right eye ptosis LOL, I was still very much asleep. I always fall asleep on the plane, but I was wide awake for the trip there. I was thinking too much about my appointment with Dr. J.

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We got to DC with some time to spare, so we stopped at a little cafe to get something to eat and a very much needed cup of coffee. Once we finished our coffee and snack, it was time to walk over to Dr J’s office for my appointment. I always feel so bad because Dave gets stuck dragging my two suitcases wherever we go to fill with “the goods” for the way home so it is a pain in the butt for him to get around. That guy loves me.

My name was called and I had a different nurse than I am use to. I was hoping for something I had already tried before, but found out I was to try a new IV, Tigecycline. It was a small bag, even smaller than my Cipro, so time was I was pleased. Goodbye Zithro IV! I was warned it was 6 times stronger than Doxycycline, so it would likely make me very nauseas. Super! The Lymie weight loss plan.

Annnndd the classic Kimmiecakes new protocol thumbs up pose…

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Dr J. came in and we discussed a lot of the issues I have been having this past protocol. He sounded a little concerned that Babesia is still very much an issue for me, after doing so poorly on my Coartem challenge. I told him about my foot pain and numbness, and my newfound hearing issues, among how my last 6 weeks had been in general.

He then tested my ears, and did not see anything wrong with them. I was concerned as hearing loss can be a side effect of Zithro, but he strongly believes I am having “neurological misfirings”, as he says I still have a lot of them. My paresthesis, neuropathy, and emotional issues are some of my misfirings that are still very much there.

Then came the big question that I had for him. I wanted to know when he thought I was going to get my line out. He said likely toward the end of my protocol in March, which would also be the end of March, or it could be longer. He then told me, “You still have a long way to go”.

 Gasp. What happened to the home stretch? Damnit damnit damnit. Not going to lie, my heart sunk on that one. I am a positive person, but hearing my reality was a bit hard to stomach. I know I have made improvements, but now knowing I will definitely be having IVs for over a year is definitely a tough thing to hear. It is hard to hear that I have a long way to go.

Another thing that made me a little sad was that instead of my seven week protocols, he wants me back every four weeks again. I always feel like as soon as I get home, I have to fly back again. With a little torture in between.

My protocol is very much different this time around. Lots of antibiotics, and a little less pulsing on some of my days. He said this is going to make me nauseas. It is going to make me feel terrible. It is going to make me very foggy. Merry Christmas to you, too, Dr J. LOL

So what is my new game plan? I knew that I would obviously be starting the Tigecycline that I had just tried, but I was also introducing new orals, and bringing back some old medications. Here is my blob of illegible writing and colors for the next month. I have grown to be used to the writing, but it seems every month the highlights on the page grow more and more.

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Week 1 – Monday, Wednesday, Friday – Meropenum and Tigecycline IVs 1 x day

Monday -Friday – Septra DS 2 x day, 700 mg Artimisinin 2 x day, Leucovorin 1 x day, Pyrimethamine 2 x day

Thursday, Friday – Flagyl 2 x day, Diflucan 2 x day

Monday – Monday – 250 mg Lactoferrin 1 x day, 4 tbs Xylitol 1 x day

Week 2 – Sunday – Thursday – IV Meropenum 2 x day, IV Cipro 2 x day

Week 3 – Monday-Wednesday – Coartem Challenge

Week 4 – Off, back to DC

We wrapped things up and headed home. I had a really hard time at the airport. I can tell you right now that this is going to be a very long three weeks of antibiotics. My Tigecycline left me in a daze, lightheaded, sweating, shaking, and my legs feeling like Jello at the airport. There were literally NO wheelchairs at the airport so I had to trek it on my own. Dave had to keep stopping for me as I needed to sit down as I felt like I was going to pass out. I turned a pale shade of grey and was completely nauseas, and had that disgusting watery feeling in your mouth before you are going to throw up.

With help from Dave, I made it. I got onto the plane and slept until we reached Boston. I felt a little better as I was no longer as lightheaded and shaky, but the nausea decided to stick around. Dave took the puke bag from the plane and stuck it in my purse for the long drive home.

I had to pull the bag out of my purse as I thought I was surely going to get sick, I almost wished I did so I might have felt better, but ended up being okay. We stopped at McDonald’s and had a non-gluten free dinner of a McChicken. Whatever. I felt terrible, and that greasy, GMO filled, not really chicken but it is called chicken, chicken patty sopped up some of the nauseas feeling.

We picked up our pup and finally made it home. Phew. What a long day. In the back of my head I thought it was going to be a lonnnnnng three weeks. I was very sad inside after the day’s appointment, but it is what it is I suppose.

All I can think is I would rather deal with this now and reach remission, instead of have this creep back up on me and have to start the process all over. My best friend told me, “You’ll get there, you’re doing great… each hurdle jumped is one less ahead of you”. And she is so right.

14 thoughts on “December Part 12 – New Protocol With Dr J

  1. Just a word to let you know that I admire your courage and positivism. I hate this disease. I am sorry to hear that you have a long way to go. One day at a time… And one day we will beat those bastards!

  2. I am disappointed for you that you have to keep the IV. It does sound like a rough time coming up, but remember it’s only 3 weeks, then a change. I’ll be calling you soon!

    • I got your card and have yours to mail on my dash to mail, after my journey at Hallmark I didn’t want to go to the post office lol Going in the mail tomorrow! And yes do call or message me when things get less hectic!

  3. Wishing you positive energy and prayers. This has been a very rough round of 8 weeks for me. When I am able to read you encourage me to keep up the fight.

  4. I’ll be thinking of you, and you are so right ” it is what it is” your positive attitude, courage and strength will get you through. Btw, they can those pics ” usies” lol you look wonderful despite all you have been through.

  5. Just catching up on your blog.

    You are one of the most positive people I know – especially considering the protocol ahead of you. But, for every bad herx-filled day, you know there is a day of remission paradise ahead of you! Just think of how great Hawaii will be – and that big awesome drink with the umbrella in it! 🙂

    YOU CAN DO THIS! I KNOW YOU CAN!

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