And just like that it's been another 4.5 months since my last post. Things continually change and I continually wait for more test results or appointments before writing again... Fall and winter have been overall up and down, but still overall up!
Treatment has been continuous, but eased off of and hit hard again a few times throughout the season for a couple of reasons:
Surgery:
If you recall, I had an MRI done last fall to basically make sure we weren't dealing with a neurodegenerative disease on top of Lyme and co-infections. Thankfully that was ruled out, but we found mold toxicity in my brain and cysts in my sinuses. We're still working on figuring out the mold toxicity, but I did meet with an ENT to go over the MRI results and get his perspective on the cysts and whether or not they were dangerous. Turns out we decided to leave the cysts alone, because they would've had to scrape the edges of my sinuses to get them entirely (owww...), which would leave scar tissue, and they often times grow back anyway. It wasn't worth it to me if they weren't thought to be harmful... But unexpectedly to me, and unrelated to Lyme, we also determined just how bad my deviated septum was, and that I had concha bullosa and bone spurs that were also blocking my airway. Now I know why it's been so hard to breathe out of my nose for so many years!
Although these weren't the things that sent me to the ENT to begin with, it was good to find some answers to my breathing woes. After talking it over with my Lyme doctor, I decided to go ahead and have the surgery to excise the concha bullosa and bone spurs, and repair the septum, because you know, breathing is important. The surgery was successful in that my airway is clear for what feels like the first time in 10-15 years! Apparently it'll still be healing for the next 6 months or so, but the difference is already awesome. I'm thankful that the surgery didn't set off any major Lyme flare, which was a concern.
In regards to treatment during this... I started Rifampin at the beginning of December, which I'm familiar with because I took it for a long time with my previous doctor. The goal was to start this before surgery in order to simultaneously fight Lyme and co-infections, as well as the MARCoNS infection that we'd recently found out that I had in my nasal passages. We wanted to get that under control before surgery on December 20th and Rifampin is one of the only things that can knock that out.
I did ease off of my other antibiotics during December (Flagyl, Alinia and Malarone) because I didn't want to be having a severe herx reaction and dealing with the aftermath of surgery at the same time.
When I started back up on Flagyl in January I had a pretty good herx reaction (and by "good" I mean terrible) with headaches, chills, migrating pain, zapped energy, heart palpitations and internal tremors so bad it brought me to tears. I'm glad I eased off during surgery. That would've been awful.
When I started back up on Flagyl in January I had a pretty good herx reaction (and by "good" I mean terrible) with headaches, chills, migrating pain, zapped energy, heart palpitations and internal tremors so bad it brought me to tears. I'm glad I eased off during surgery. That would've been awful.
Europe:
Due to January's herx, I decided to take it easy again and cut back on treatment while Tyler and I traveled to Europe at the beginning of February. I didn't want to be in severe pain or not have any energy to keep up due to herxing. It was actually pretty amazing, and we feel as though that trip was a testament to how much I've improved overall. I didn't experience horrible neck, back, or hip pain on the 10 hour flight to Amsterdam, or the flight to Munich, or the two hour bus ride to Garmisch (just some pretty bad, but short-lived neurologic hand and arm pain), which you have to understand is the most shocking thing in the world. Often times it's hard to sit in a car for 30 minutes. My joints and muscles usually can't handle it. Somehow they handled our trip like a champ, and I was able to walk and walk and enjoy all the sights without being in pain or fatigued. I wondered if pushing so hard would catch up with me, but it didn't seem to much (at least not like I expected it to).
Now:
I started back up on my full protocol on the 16th, and so far I haven't had the kind of herx reaction that I expected... I've had an increase in internal tremors again, but I haven't had the severe head/neck/jaw pain that usually accompanies my Flagyl herxes. I'm thankful for that.
My next appointment is at the beginning of March and I'm curious to see what our plan of action will be at that point. At my last appointment, we'd discussed taking an antibiotic break soon-- maybe in March or April-- to both give my body a break from them, and to trick any hiding bugs into thinking we've stopped treating so that they come out of the woodwork... Then we'll hit them hard again... Positive thoughts for the possible upcoming antibiotic vacation. Coming off of treatment is always scary as we wait for a possible relapse.
Overall I feel like I'm starting to feel more like a normal self again... I say "a normal self" and not "my normal self" because "my normal" has been so abnormal for so many years. I think I'm gaining a new baseline. I'm realizing lately that I'm having some moments of feeling so well that I'm shocked because I never thought I could feel like this... Like realizing that my hips don't click and hurt when I walk anymore... Like, at all. They used to never NOT click... For about 18 years... I knew it was from Lyme, but I guess it was something that I thought would never go away. And it has. My biggest, most consistent and long-time symptom has gone away. That is incredible. Reminders like that have given me a different sense of hope. That feels really good.
On we go.
