To be honest with you, the past few days have been a blur to me. But that’s why I write notes to remember. LOL Monday was a day of rushing around trying to get things done. I was so out of breathe when I got up in the morning and overheating, so I had to keep sitting down to get up the strength to get my ass up and get ready for work. I was smart this time around, knowing I was leaving for Boston on Tuesday night, flying out to DC on Wednesday morning. The past few times I was panicking trying to write down my bazillion prescriptions and supplements, as well as their dosages. Top three issues of the month. Can I change it to top 25? Ugh. I usually ask Dave or my Mom to help me. I usually get a “make sure you include rage and extremely emotional on there”. Yeah. That would probably be an issue. Dr J also wants to know new issues, etc. on the paperwork. I asked about my high glucose and creatinine levels, as well as edema, and if I had to worry.
At least I felt like I got a little bit accomplished. I got some cleaning done over the weekend too, so a little less OCD issues helped. By the time I was done everything on Monday, between my terrible pain issues and fog, I planted myself on the couch. “Thriller hands”! “AHH”. I missed the clapping part though. Boo. Not quite as fun. Hahaha only kidding. I always consider this and my stuttering when my brain blows a fuse.
Tuesday we stayed at a hotel in Boston. I still had some running around to do, including my massage therapy, which went pretty bad. I had terrible plantar fasciitis issues, as well as terrible connective tissue issues in my neck and a lot of back issues. Oy. It is always something. I think part of my foot issues was due to the ACA in my feet, as it was pretty excruciating to put any pressure on my toes, so I was walking on the other parts of my feet.
We made good time and got to the hotel, got a bite to eat, and I tried to fall asleep as soon as possible to get a good night’s rest. Nope. The first time in a long time, I had nightmares upon nightmares all night. I usually sleep like a rock when I stay at hotels, but it just wasn’t happening. So I disappointedly got up in the morning, with puffy, dry raccoon eyes.
Our flight was a little behind, but it was no big deal since I always plan for that. We had a couple hours before our appointment so we went to an Indian restaurant to try since we have never been. Not too bad, but I think we will try the Thai restaurant next door next time. I dunno, I think I am stuck on the New Orleans restaurant close by.
We went to Dr Js a little bit early, and the nurses actually came by and grabbed me to start the appointment when we got there. I was kind of bummed, our favorite nurse didn’t do my vitals or ask me all the questions in preparation for Dr J. First came the weigh in. Drumroll please… I gained a whopping 6 pounds this month. SIX POUNDS! Wow. And I was upset about my mailed notes.. “gained two pounds…. noted” I wonder if my notes this time will read, “Gained 6 pounds… fatty mic fat fat. Moo. ” That sucks. I have gained 31 pounds since I have began to see Dr. J.
I was really excited since one of the people I have met through the groups online came to visit me while I was waiting in the exam room. I gave her a hug, and we talked for a little bit. She is absolutely beautiful, and I will tell you that she is going through what I have with the extensive treatments. It is proof how invisible this disease can be to many that are completely suffering inside. *Another future blog post? I think so*
Dr J came in and by then, I was so tired and out of it. Dave helped out and showed him pictures of the ACA on my feet, and piped in about the issues we needed to talk about. My breaks being piss poor, with continued hypersomnolent issues, and pain all over. I told him how everything went, and Coartem actually being much better for me than the last month I took it. The stuttering definitely came out that afternoon. “Babadadada”… then whatever I was trying to say. Super.
We talked about my high creatinine levels and the edema, with concerns of kidney issues. He did not think the edema was correlated with kidney issues, but with the high creatinine issues, he was concerned about it maybe being a side effect of the medications of my first week, specifically the Daraprim and Leucoverin.
He believes the edema is just fluid build up that will come and go for me. The high glucose while fasting he asked if diabetes was in my family (as far as I know it isn’t), so both are things that he wants to monitor.
So what is the new game plan?
The picture is a little less Lisa Frank throw up like, but don’t let it fool you. He had a different plan for me. He believes one of my issues that is keeping me from making more progress (he said most of his patients are doing better at this point), was MYCOPLASMA. When you have a bacterial disease like Lyme, it can shield mycoplasma in your body, and when Lyme is being attacked, out comes the mycoplasma. What he couldn’t understand is how Tigecycline wasn’t touching this like it should. So I will be on Minocycline during my breaks. Just for a few days, but he thinks it will help with my pain issues, and mycoplasma can manifest in your body pain wise, specifically your joints. Okay. Let’s give it a shot.
I get another week off. Well, sort of off since I will be doing Minocycline, but for simplicity I guess I will still call it a break. He wants to see if I will do better on my breaks. He said that is one of the big parts of holding me back.
None of those other orals from last month this time around on week one. Let’s keep my organs in tact please and thank you. No adverse effects. I will be starting a new oral medication called Rifabutin. It is a stronger version of Rifampin, which a lot of Lymies are probably familiar with. The only thing is, that it can turn things like tears, sweat, and urine orange. Super. I told Dr J it could be especially fun mixing the meds with my B12 shots, which turn your urine pink. How festive! During that week I will be doing Meropenum and Tigecycline IVs again at night, but only Mondays, Wednesdays, and Fridays. Lactoferrin and Xylitol will continue Monday through Monday again, and my beloved Flagyl and Diflucan will be added on Thursday and Friday. Barf.
Week two is going to suck. Call me a pessimist, but I know from last month and this will be every single day Sunday through Thursday. IVs only. Meropenum twice a day, Cipro and Tigecycline once a day. I’ll deal. Chinese food to get a little chunkier and ward off the nausea, and an abundance of Marinol pills.
Week three is another round of Coartem. And that’s it! Like I said, it sounds like a lot less but this time is going to be a rough one. I get another week and a half off before I see Dr J again after that, so this is a 6 week protocol for me, instead of a 4 week one. I am happy about that because the 4 week ones suck. I feel like I just flew back, got tortured a bit, and have to head right back.
Now here is the news. If I do better in this 6 weeks, as he emphasized a big “if”, (I’m going to go with it being easy peasy and I do awesome on my breaks), that there will be one more round when I see him at the end of March. One more round!
So that means end of April/May I can finally get this sucker out of my chest. I know I still have a long journey after my line is out with orals antibiotics, but it would be great to be in the water and have this line out of my chest before it gets hot and sticky in the summer. However, I also know I can’t rush things or lie to him if I am not making more improvements, since I really don’t ever want a line in ever again. Please keep your fingers crossed for me that this round will be a turning point and I will make a huge amount of progress.
As always, a thumbs up at Dr J’s!