I was meaning to write about this weeks ago, but always figured there would be another time, and when there was time, I wasn't thinking about it. So here it is, the night before my next LLMD appt and I have yet to write about how the the past 3.5 weeks of azithromycin treated me.
In a word, things were calm. Well, sort of. But I imagine that increasing the dose will increase the side effects and that adding another med will have its own effects on me. Not to mention what it will do to the critters living inside me. Thinking about this has suddenly cast a fearful shadow over me. While I stated that things have been calm, they have not been perfect.
My stomach bothers me on a daily basis. There are a number of different types of pain that hit me seemingly at random. Often its nausea. Sometimes its sharp, making me wince and gasp. And another frequent sensation is a dull ache of sorts, which I described like being punched in the gut. Its deep and spreads wide, gripping in its own way. I have discovered that eating small bits, particularly when I take my zith, helps with the nausea and sharpness. The gut punched pain feels a bit better with moist heat like a hot rice pack or hot water bottle.
That was the stomach. Specifically, not in a general 'tummy' sort of term. The intestines are another whole deal. I get random gas pains and cramps, which heat also helps. They occasionally signal that its time to go to the bathroom. When I can feel the pain specifically moving along my colon, I know that diarrhea is soon to arrive. At least it hasn't happened very often, maybe once a week or so, and I'm seeing a pattern, so I am a little forewarned.
It rather sucks to have all this gastro-intestinal discomfort. I kind of feel like a low grade stomach flu is always here, or right around the corner. I often don't feel like eating when I'm feeling lousy like this, which in some ways is good. Unfortunately I haven't really lost any weight from it though. And sometimes, usually in the evening, maybe 3-5 times a week, I get a case of the munchies. I was warned of this side effect at my first appt, and thankfully it hasn't been that bad yet.
I'm concerned about increasing the zith. Right now all these side effects are pretty much dealable. It's not pleasant, but its not debilitating. I'm just wondering how I'd be able to deal with worse tummy stuff. Perhaps I'll buy some stock in ginger. That has helped quite a bit when I tried it - a slice into some lemon fuzzy water. Pain and nausea gone with the first sip. I had to keep drinking it though, cuz it would return fairly quickly. But, improvement is improvement!
One more side effect to talk about.... Sun sensitivity. The last week or so I started noticing my eyes were getting more and more sensitive to the sun. And then my skin started burning. Well, it felt like it was burning, but it didn't really turn red. I have discovered that I need to have my skin covered when out in the sun. Which really sucks because I'm pretty heat sensitive and overheat easily, with a difficult cooldown. I wear long pants, long sleeved shirt buttoned up to my neck, my celebrity hangover sunglasses (you know, the HUGE ones that are really dark and cover half your face), and a big hat with a neck veil or whatever that piece of fabric that hangs down to protect the neck and ears. And my cheeks and nose still burn. For the most part I have found that fabric works well enough if its not super hot and super bright. Which I like, because putting on sunscreen takes a lot of energy! I could do an entire blog post on protecting my skin from the sun. Hopefully I'll actually do it!
As far as the symptoms I had before I started all this, I am feeling better and worse. A handful of things have improved. My air hunger isn't every single day. I have a few bad days and a few good ones; it cycles, which I guess is how Babesia likes to work. A bunch of my muscle symptoms ahve improved too. Not gone away entirely, but not as often. Some of my hypersensitivity is a bit better, some worse (SUN!). I went through the list of symptoms I wrote up in May and made changes so I could compare the two. I'm not going to go through all of the details.
My brain fog has gotten worse. I can focus less and comprehend less and I forget more words. And my fatigue is worse too. I am now able to do about 5 minutes of work on my feet, or even sitting if it involved active arm movements before I have to rest. And it wipes me out. I need a good 20-30 minutes to recharge, and is if it doesn't include yelling at the dogs or the kid, or having to get up for anything. It really really makes living life difficult! My balance seems worse too. Like I can't quite get my weight centered over my foot if its off when I set it down. I'm so much more tippy. I haven't fallen or tripped more, just less likely to be squarely balanced.
So yeah, things have pretty much reacted the way I expected. Some things get better right away, and others get worse. But I'm hanging in there. All you can do, right?
So I have my ducks in a row for my appt tomorrow. The bloodwork (CBC with platelets, and a liver panel) should be at the dr's office and I've gone over my symptoms and side effects and have them printed out. I'm starting to get nervous though. I don't want to get much sicker than this, cuz then I'm not sure how functional I'll be able to be. I'm just scraping by as it is.
Maybe I'll have one more calm weekend before we ramp things up though. Jared has a family reunion up north this weekend and his mom is in town for that. We're all planning on going, and I'd love to not have to deal with new meds. So I'm gonna see if I can wait till Monday to start the new stuff. *snicker*
*loves you* Thank you for sharing all the details. I know what it's like to have to dissect and identify every piece of what's-going-on. This alone takes up a significant amount of the little bit of energy you have. Love you.
ReplyDeleteNoIR amber sunglasses--the ones they use on the Marshall Protocol--will probably help your sun sensitivity when it comes to your eyes. At the very least you might want to try the 40% (that's the lightest for the MP). They block IR and reduce light to the eyes, including blue light. (We use 2%, 10% and 40%.) They are designed to block light from the top and the sides as well. If you don't wear glasses, you won't need the fitovers and probably can get away with the wrap around frames (#35).
ReplyDeleteHere's a link: http://www.noir-medical.com/pdf/NoIRMedicalCatalog.pdf
I find calling them the best. The amber is more effective (a light spectrum issue) but sometimes an adjustment (for me, worth it).
I'm sorry you are experiencing this; it's an unfortunate side affect when your body is killing pathogens (I am light sensitive even though I am no longer on antibiotics).
When I was going through the worst sun sensitivity, I lined the top of my hats so the crown of my head had more protection.
Hugs to you. :)
I like the lining the hat idea, because it always seems like my part is red and sensitive.
ReplyDeleteI have giant dark prescription sunglasses that I LOVE. I don't know that they're NoIR, but they were the darkest the glasses place had. The lenses are HUGE and so are the bows, so very little if any light gets in around the edges. I'm not planning on getting new ones any time soon, but I'll try to remember the NoIR when it is time for new ones.
Thanks!!