I recently finished my protocol and am on a little break until I go back to see my LLMD. The last days of Coartem although I was a lot less emotional than I usually am… not really sure why.. but I have heard of others that have the same reaction so I know I am not alone with that. Side effect or the Babesia stirring around, who knows.
The classic Babesia symptoms had definitely came to me, mostly in the form of sweating buckets, and air hunger. I did have to press my heart monitor button once because my heart rate was rather high trying to get ready for bed. To my surprise, there was no insinuations about doing drugs or partying, so that was pretty nice. Maybe I scared them a little bit. Haha. I can be quite unpleasant if you get on my bad side.
When it comes to pain issues, I had one that I haven’t really had. Especially during nighttime, it is common for my legs, feet, and knees to hurt, but for one entire day it literally felt like my right leg was going to explode. It felt “full”, if that makes any sense, and it was beyond excruciating. All day, all night. I kind of try to take pain as an optimistic thing, as it seems like it is a step in the right direction. That sounds like an odd thing to say, but it seems like a lesser of two evils. Severely neurologically impaired, versus pain issues. Not saying pain is a walk in the park by any means, but not having the pain I have had in the past few months and now having it, maybe it is a good sign.
I have had my moments with my tics, one ripping a big layer of skin off my knuckle. I was sitting at my office desk, and did my thriller dance, and my hand slammed against the metal underneath the desk. Ouchies. It is funny that now my coworker, as well as friends and family don’t even flinch when I have tics anymore. I don’t even think Dave notices when I have my tics, which occur at night more than anything.
They occur way less often than they use to be, and are nothing like they were. Every once in awhile he will joke and ask me if I have a question when I do my hand raising though. LOL At least we can joke about it. I think that is the least of my problems at this point. I can completely tolerate this issue more than anything else. It isn’t hurting me, doesn’t make me dizzy.. nothing. When they were bad, I would just avoid the movies, fancy dinners, and I probably wouldn’t be considered appropriate if I went to church. I never felt well enough to try at the point to do those things anyway, so I wasn’t really missing out.
See my “About Me” video if you have not seen my starting point before seeing my current LLMD. Trying to explain and seeing I think are two entirely different things. When people think tics, they think of fairly common Lyme “twitches”. This appeared to be full blown Tourette’s Syndrome. Two different things for sure. The turning point in helping this out was probably around my 5th month of IV treatment with my doctor.
My electrophysiologist appointment has been made for next month. Although it is still the same hospital that has been treating me poorly, this is an entirely different department, and I believe this is the doctor that believed me when I had told him my LLMD believes I have some form of dysautonomia. This will either be a positive experience, or a waste of time. To tell you the truth, I am not worried a bit about the appointment.
After having a brief discussion with Dr S about my blood work, he told me that it appears that I have hemolytic anemia. You know me, I went and did some research on the topic, and there is a lot of overlapping symptoms that I have been having, including dizziness, tachycardia, and in some forms an enlarged liver and spleen.
Dr J had told me that the enlarged liver and spleen was due to my Babesia infection, but that was before I had these new tests on my blood work. This will be another topic to bring up at my appointments with the LLMD and electrophysiologist. My list keeps growing and growing with things I would like to discuss. Yes, I will probably be that annoying and time consuming patient. At this point however, I feel like I really need to be.
I hope everyone had a great 4th of July! I had to work over the weekend, and although I was exhausted, sweaty, and my body was in pain, I made the most of it, and hung out with friends. I decided it was best to not go to the fireworks, as I know how I am in those situations. Between the possibility of having to do some walking to get a spot, dealing with the massive amounts of people, and of course the loud noises and bright lights, that is pretty much setting me up for failure.
That is just way too much stimulation for me at this point. Unless I had my wheelchair, seizure meds handy, sunglasses, and ear protection, it would likely set me up for an “incident”. With that giant safety kit, it really wouldn’t be any fun and more of a pain in the ass than anything else. Maybe next year. I think mentally I have a fear of the 4th of July anyway, as that is when I had my grand mal seizure two years ago and had my not so fun ER experience.
Dave and I went to our friend’s house for a BBQ yesterday when I got out of work, and other than a bit of dizziness, and my usual Lymie symptoms, I feel like I did really well, and felt a little more like me. There was plenty of places to sit so I didn’t have to stand around at all, which I think helped a lot. I was more social than I have been. It was nice to meet some new people, and catch up with some people that I haven’t seen in a long time.
Well, I think my body said “when” today. It is frustrating that even sitting at a BBQ gives me consequences, sometimes for days. Let’s hope it isn’t for days, and it will pass by tomorrow. I am also going to blame this on Coartem though, as it stays in your system for a decent amount of time, and it is a nasty herx.
Today was kind of weird. I felt alright this morning, well enough to actually take a shower and wash my hair. Sleeping seems to leave me drenched and it has begun to get hot out again, so I have been trying to keep up in the hygiene department for the past few days. I am sure everyone appreciates that, even though at the end of the day it really doesn’t seem to make a difference. At least I am trying.
I was having a hard time focusing at work this morning, but finally got my act together and managed to get a lot of reports I needed to get done all buttoned up. This was a big relief, since more and more have been coming in the mail, and it has given me a bit of anxiety since I like to get them done early, and I am pretty OCD about checking them to make sure they are perfect.
Just before I got ready to leave, I had this giant wave hit me. I went from okay (okay for me at least), to not okay at all. My stomach was in pain, I became really dizzy, and felt like I was completely overheated.
It was a lonnnnng drive home. I of course had that one car in front of me, that was feeling super generous and literally let every single car out of every side street that he possibly could. When you don’t know which surprise you may have, it felt like an eternity. I didn’t finish all my errands, so that was a bummer, but I needed go home, and TMI, do one of those sit on the toilet and hold a trash can times, and lay down for awhile.
I checked my heart rate while laying down, and it was 103, which really isn’t too bad at all. My blood pressure was higher, at 127/84, and I am running a temp of 101. Having the temperature is leading me to believe that this is likely Babesia. I signed up for a day of green juices to detox this week, ordered some aloe juice, and have been trying to drink as much water as I can. The dull pain turning into a slightly more stabby pain is making it difficult, so small sips it is.
I have been spacey, and just realized I have been home for awhile now, and had one of those spacey moments. Instead of my space out go-to of having the TV Guide going, I had a Spongebob marathon space out. Haha. I clearly need to take a nap. Once again, I am a little bummed because there were some things I wanted to do some things around the house, but I don’t think my body is going to let me. Resting has helped, but my body is so tired.
Tomorrow is another day, and it will be a day I will definitely focus on lymphatic drainage during my massage therapy session. Maybe that will help. Maybe it is just a case of the Mondays. 🙂
Have a good week everyone!