April Part 1 – Ups and Downs

I know it’s been awhile since I have posted an update once again, I have been pretty fizzled out lately. Let’s see here… well, let’s start with my new medication, Nuvigil. I have been on it since around the middle/end of January. It has honestly been life changing for me.

I used to sleep for up to 15 hours a day, have cataplexy events that we once thought were likely limbic seizures, I would fall asleep randomly, and have this overwhelming anxiety if I couldn’t sleep right then and there. I had to try to plan out if I was to go and do anything to make sure I had a nap, and even then a lot of times I ended up staying home. I wasn’t getting any exercise, not that I am very active but it sucks to not be able to have enough energy to even go to run a single errand. I really need to have my legs moving a bit, as I have POTS, and keeping up with circulation is a help.

Everything seemed much better for awhile. When I say that, I know you folks with chronic illness know what I mean… you are still sick as shit but there is so much improvement..for the time being.

I was actually volunteering to do our grocery shopping without my chaperoning husband. I was able to make it out to dinner a few times with Dave, which is a really hard time for me around 5:00. That is when I will absolutely crash, even if I had fallen asleep in the early afternoon. I was being quite the chef, trying new much more time consuming recipes, and had enough energy to get all my daily errands and chores done. I was able to do a lot more office work, and send out the taxes to our accountant for work.

This sounds cheesy, I know, as I am almost 30 years old (AHHH!!!!), but after completing all of that hard work with minimal stress, my Mom said that she was proud of me. It meant the world to me, something so simple. It was something I really needed to hear from someone and feel, since for so long I have felt pretty useless. That feeling is downright terrible. I had a very big mental boost.

I was happy. I was still sick, my medication is not a “cure all”, but my quality of life was so much better. I felt much more like “me”. This sounds weird and possibly whiny, I swear it isn’t, I almost feel like occasionally I have moments where things are too good to be true, I know sometimes you really push yourself on a good day and you have a few bad ones after, but I had a much bigger feeling of hope. When I have that “up” feeling, when something really good is happening, it seems like every time I crash. And I did, rather hard.
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My POTS has gotten much worse. I have found myself many mornings and nights on the floor, seeing gray. This picture is a little example from last week I think? I had barely stood up off the couch. Now… if anyone knows if there is any significance, my systolic number is rather high, which never happened before but it is a little more of a reoccurring thing lately. My diastolic number is low. Between the systolic and diastolic, there is a large pulse pressure difference. Thoughts? All I know is I am getting more and more dizzy, passing out, and am becoming more of a couch potato and the much better moments seemed to come to a complete halt.

The POTS I am taking a guess, is worse because of Babesia. Drenching sweats, hot flashes, chest pain, my heart feels like it is pounding out of my chest. Air hunger. I have been more nauseated, continuing on with my stomach pain, it has spread to my left side as well, and I have been much more foggy and just generally weak.

One symptom that worries me once in awhile is this massive head pressure I get. It isn’t painful at all, but it is really intense, I almost feel as if my brains are going to start pouring out of my nose and ears. When this happens, I can’t even see straight. It is happening more and more. I am wondering if part of it is toxicity, I will get to that in a bit. I have become further nauseated at night, anything and everything has just gone downhill.

I have been recovering from tendonitis in my right knee. I didn’t get it from playing sports, running, anything heavy duty. I got it from simply standing longer than usual. I’m laughing about it now, but that is pretty pathetic. Who the hell gets tendonitis from trying to stand? For real? Me I guess. Just one day I instantly felt this excruciating pain that dropped me right to the floor. I could feel it laying on the couch or trying to stand back up. I had a brace on for a couple weeks, but there was the concern that it might make those muscles even weaker. My knee is a little better, but there is concern for soft tissue damage that I will have to keep an eye on. Oy vey.

I had signed Olive up for obedience classes, and thank god for Dave, he completely took the reins, I just sat the entire time. Her last class was on Monday, and somehow I was able to do the final little course in the gym with her. It was just going around chairs and different stations, but it was pretty hard to do. The lights in that sort of atmosphere fry me and I am immediately in a fog and feel like my body is floating.

My Tourrette’s has come back a lot more, my movements, finger snapping, hand raising, cringing, and the “AHH” yell. Fantastic. I was warned a stimulant might do this, I am not so sure it is from that though.. as this is relatively new it has come back full force, and I started my medication in the beginning of January. That doesn’t physically hurt me in any way, but gosh, is it annoying to have.

I have also noticed a pretty big decrease in appetite. I have dinner all ready for when Dave gets home from work, and it finally hits me that I hadn’t eaten anything during the day. At least I have a little buffer on the weight situation, haha, not that I am overweight by any means. I have lost 10 pounds, and between my ass and gut I am around 6 inches down. My gut was rather distended and is looking a lot more proportional these days.

My medication has left me with a giant case of oral thrush. It is getting a little better now, it isn’t actually fixed, but it was to the point my tongue was swollen and bleeding from these little red spots. The bleeding has stopped, but it is still a little swollen, and it still has a pretty gross coating to it, no matter how much I brush.

I was put on Sporanox as well as my Nystatin, and it has been absolutely no fun. That is where the toxicity comes in. You can herx from candida, and I think I was just completely overloaded. I had testing done, and I actually did not test positive to the very common candida albicans. I have a species called candida glabrata. I googled it and of course there was some horror stories.

I am just trying to keep at it, watching what I eat to not let it grow further and taking my antifungals, natural and prescriptions. I have a fear that when I go back to my sleep neurologist next month, she is going to pull me off of this drug. I really hope not, there isn’t much you can do about narcolepsy, this medication, a very similar one, Adderall, and Ritalin. I really don’t want to be on anymore drugs that can be addictive. I can’t worry though, I don’t know what is going to happen.

I finally had my conductivity testing in my legs and feet. Guess how much of this all is permanent damage?? Just guess… ZERO!!!!!! I am not sure how to really read the results, but I was told my response was sluggish, it might just mean the neuropathy hasn’t caused any permanent damage yet, but I am in the clear! That is fantastic. The neurologist isn’t really Lyme savvy, but this information was useful to me, and Dr S.

If I had permanent damage, at least I would have a bit of an answer to my crazy puzzle, but without anything permanent, this means that I still have those damn bugs. Argh. I know it CAN and WILL get better though. That is amazing news. I am still not in good shape to start antibiotics again so we decided on working on Babesia. I also got a nerve stimulating tincture, and was told to continue to work on my adrenals.

I waited to finish the Sporanox, I’ve been trying to get rid of this fungus or keep it to a dull roar, so treatment wasn’t the first main focus of mine. I really don’t think treatment in general is super effective if you are toxic or full of candida. I just started Mepron and Artimisinin yesterday. I am glad I waited, it would have just been way too much on me to do both. I also wanted to very clearly differentiate what was causing what with symptoms or herxing.

I am not jumping for joy even having to start back only on Mepron and Artimisinin. I don’t really know if that is rugged or not.. I usually paired it with at least 2 antibiotics, most of the time more. So it kind of feels like a baby dose of treatment. I don’t mind that yellow chalk that so many hate, but I have been left wondering if I will get any worse. Not going to lie, I am feeling it. Everything Babs-ish has been exacerbated, and I am running a fevah today.
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It’s working though, that’s what matters. But hoping I won’t completely crash. I gotta do it though! I am just keeping the mindset that it will give me an improvement.

The past couple of months have definitely been very back and forth. Contradicting thoughts, I know. That is chronic illness for you. I’m staying positive though. Things seem to have been falling in place more this year than the past few years of being a complete mystery. I see Dr S next week, I really don’t know what the game plan is going to be. I know I will have some labs done, I will have to figure out what tests I might want to add. How cool is that? I have a doctor that is open to my thoughts and opinions! Wishing you all a good Easter!!!!

No, I didn’t forget about an Olive picture. The gang and I during a nap. And just had to share a picture of Cooper begging for a scallop. I am fully aware I am the crazy dog lady. 🙂

3 thoughts on “April Part 1 – Ups and Downs

  1. Please read up on sporonax and adrenals! I have no thyroid, take cortef and was put on sporonax. I only took it on the weekends but I would “crash” two days after stopping it. By week three I figured it out and stopped taking it. Just a heads up .

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