Yikes, it has been quite a while... Things were changing so much and I was continually waiting for more test results before I posted again, and now 4.5 months have passed!
Things we've been working on:
At my June appointment, my doctor found that my white blood cell counts were really low. He speculated a couple of possible reasons: that we were pushing too hard with treatment and my body needed a break to catch up, or that there was a problem with my bone barrow. I was concerned about the latter because my old doctor would tell me at every appointment "your white blood cell counts are on the low-end, but nothing I'm too worried about yet. Just something to keep an eye on..." And my new doctor had been saying the exact same thing to me since I started seeing him last December. Every month it was "something to keep an eye on," and every month I wondered if they remembered that they'd told me that for the last two years. My doctor said the low count was likely from treating too hard, so we didn't really have an option but to stop treating for a little while-- that way we could give my body a break and a chance to build my white blood cell count back up, and then re-check my counts to make sure they started climbing again. If they didn't go back up after stopping treatment, we'd know we need to do more testing and look at my bone marrow.
Stopping treatment was rough. My doctor told me to stop for as long as I could without relapsing. He told me to start treating again at the first sign of relapse.
The first week off was difficult and I thought "there's no way I can stay off." But I pushed through and things started to calm down for a little bit, so I went with it. Over the next few weeks, I felt pretty well overall, but started to slowly have old symptoms pop up-- mostly pain. I find that there are certain types of pain that I tend to try to push through more than others. There's the pain that I've had since I was a kid, which I think I push through just because I'm so freaking used to it. And then there's the more neurological stuff that just plain freaks me out.
When it's joint pain or something that I've experienced since I was a kid, I get this feeling again of "this isn't that big of a deal, I'm fine, I'm FINE." It's complete denial. I should know now, after having had those symptoms disappear for a while, that they're not normal. It feels so normal that I trick myself into thinking nothing's wrong. I'd be running and in pretty severe pain but would push harder, thinking "you can't stop me from being strong anymore. I'm fine, I can push through this." And I mostly pushed through that pain (not to be misread that overcoming Lyme is a matter of will-power. That's absolutely not true, clearly). But then Lyme pushed back at me harder and started giving me other types of pain that I know are a really bad sign when I get them.
Sharp, stabbing, sudden, shooting pains that literally bring me to my knees. At one point I was standing at the kitchen counter and one of those episodes struck and I wailed and held onto the counter and then slid my way down to the floor. They were quick stabs, like I was literally being repeatedly stabbed with a knife. It would hit me and be excruciating, then stop for a moment, then hit me harder, then stop for a few moments, then hit me again. Tears were streaming down my face and I would slowly stand up, wondering if it was going to happen again or if the episode was over. Fun.
After enough of those episodes I snapped out of my denial and thought "well this definitely isn't a good sign..."
I was off treatment for just over a month. My bloodwork showed that my white blood cell counts did increase again when I stopped treating-- thank the heavens! We know that my low counts are from overtaxing those cells. At my last appointment in July, shortly after I'd started treating again, my bloodwork showed that my white blood cell counts went back down. Ugh. So we have this battle...
My doctor didn't like the sound of my relapse and said "we still have our work cut out for us..." I despise those words because I know he's right. I'm tired, but the battle is far from over. These little jerks are hiding, and we need to dig even deeper. That being said, I am unbelievably thankful for how far I've come in in the last two years. Thinking back to how I was doing two summers ago, it literally brings me to tears. I don't know how I lived like that. I was in extreme pain, 24 hours a day, and had such extreme fatigue and weakness that I had to sit down in the shower and sit down after walking about 15 feet. And no one could tell me what was wrong. In fact, I was told nothing was wrong. Right now I'm running again, and working out pretty hard. It feels so good.
So we continue moving forward, delicately balancing what my body needs in order to keep my white blood cell counts up and my body fighting a good fight, and what it needs to continue moving forward fighting Lyme and co-infections, without losing the ground we've made there.
Speaking of co-infections:
We also ran a new test, which tests for Lyme, as well as a number of the co-infections (I'd shown positive for Lyme Disease, but had never had tests done to check what co-infections I had). My doctor told me that after treating for 2 years, he would hope that I'd be in remission, so there's something we're missing, something that's keeping me from getting well... Co-infections are one of those things. We'd treated for Bartonella, and even for Babesia a little bit just based on the fact that I had symptoms for those infections, but he wanted to know exactly what we were dealing with so we could move forward attacking those things more effectively.
My results were positive for two strains of Lyme, Bartonella, Babesia, and Ehrlichia. Woof.
In addition:
I had a pretty terrible episode at the beginning of August, which felt like it came out of nowhere. I'd been doing mostly fine, and then one evening when Ty and I were at his parents' house for dinner, I was like "hmm, suddenly my back hurts terribly... Must be from carrying my nephew around all morning..." And within 30 minutes I looked at Tyler and said "I really don't feel good." This was a pretty good indication of what was to come, because I never tell anyone I don't feel good unless something is very, very wrong.
I could feel this episode coming on, and it felt awful. My skin started to hurt-- my entire body-- just hurt, in the weirdest and most uncomfortable way. This wasn't my usual joint pain or sharp/stabbing/shooting pains, it was general pain of my skin... Like underneath my skin was lined with something painful.. Almost like electricity? (electric sensations are not uncommon for me, this is just a quite severe case)... It was so bad that by the time we got home, even trying to respond to Tyler's questions was painful. Talking was painful. Breathing was painful. Any movement of my body whatsoever was excruciating. It lasted all night and thank God when I woke up the next day it was gone.
Not just Lyme & Co-Infections:
Sooo, at my next appointment I just briefly mentioned this episode in a manner that was like "well, I did have this weird evening that was really bad, but it was that isolated incident and I've been mostly well the entire rest of the month, so, I'm doing well.." Turned out my doctor didn't like the sounds of that episode at all (...shocking). He actually told me he was worried about MS or another neurodegenerative disease (Lyme can turn into these other diseases...), which shocked me that he admitted those things to me so bluntly. He ordered a brain MRI with a neuroquant analysis (extra imaging-- more on this later) to rule out these possibilities, but also to determine the level of likely inflammation in the brain and the cause(s). Like I mentioned before, my doctor keeps saying "you've been treating long enough, there's something else that's keeping you from getting completely into remission." So we've been working on figuring out what those other things are... Knowing what co-infetions we're fighting was one thing. The MRI would shed some more light on what we're missing.
I had an appointment and got those results this morning. Drumroll please... My MRI showed no abnormalities (no lesions or anything indicative of MS..). Hallelujah! What was really fascinating to me was the neuroquant analysis. These results showed abnormal sizes of certain parts of my brain. He said this is common with Lyme and mold toxicity... Specifically from biotoxins from each of these, which cause swelling of the brain. My neuroquant analysis shows that I have swelling and inflammation from both Lyme and mold, mostly mold! If you don't know much about mold toxicity, this isn't the best news. My doctor is sending the results to another doctor so the neuroquant results can be more thoroughly analyzed, so we can figure out exactly how to proceed.
The MRI did show cysts in my sinuses, which my doctor wants me to follow up with an ENT about. I had an MRI about 10 years ago after a strange episode, and it showed the same thing back then... And I did see an ENT in college when I got my tonsils out, but I don't recall going over my old MRI results. It's on the agenda.
The MRI yielded great information... We ruled out MS and degenerative diseases, and found swelling and inflammation from not just Lyme, but mold toxicity. Now we know mold toxicity is one other thing that's keeping me from getting into remission.
We're also re-testing my viral loads, because we haven't checked them for over 2 years, and 2 years ago my viral loads were off the charts. This is also a huge contributor to not getting better.
So, we continue to chip away the pieces. I'm continuing to treat Lyme, Bartonella, and Ehrlichia with Azithromycin and Bactrim, and pulse in Alinia for two weeks on, two weeks off, and am doing a trial pulse of Flagyl for the two weeks I'm not on Alinia; and I pulse in Malarone for 4 days every two weeks to treat Babesia when I'm not taking the Alinia (got that?... Ugh).
I feel good that we've discovered new things in the last few months that are aiding in the effectiveness of my treatment. Remission is out there.
