Yikes, it has been in a great degree a while… Things were changing thus much and I was continually tarrying for more test results before I well-informed again, and now 4.5 months own passed!
Things we’ve been working on:
At my June assignation, my doctor found that my clean blood cell counts were really spare. He speculated a couple of feasible reasons: that we were pushing overmuch hard with treatment and my carcass needed a break to catch up, or that in that place was a problem with my bone wheel~. I was concerned about the latter because my old doctor would speak me at every appointment “your pure blood cell counts are on the vulgar-end, but nothing I’m likewise worried about yet. Just matter to keep an eye on…” And my unaccustomed doctor had been saying the accurate same thing to me since I started seeing him last December. Every month it was “a thing to keep an eye on,” and each month I wondered if they remembered that they’d told me that during the term of the last two years. My physician said the low count was probable from treating too hard, so we didn’t really have an option but to leave off treating for a little while– that scheme we could give my body a violate and a chance to build my hoary blood cell count back up, and that time re-check my counts to do the part of sure they started climbing again. If they didn’t spirit back up after stopping treatment, we’d be assured of we need to do more testing and behold at my bone marrow.
Stopping manipulation was rough. My doctor told me to have done with for as long as I could outside of relapsing. He told me to outset treating again at the first sign of backslide.
The first week off was hard to be understood and I thought “there’s none way I can stay off.” But I pushed through and things started to equanimity down for a little bit, for a like rea~n I went with it. Over the next few weeks, I felt pretty well overall, except started to slowly have old symptoms explosion up– mostly pain. I supply with food that there are certain types of heartache that I tend to try to push through more than others. There’s the affliction 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 therefore there’s the more neurological trash that just plain freaks me abroad.
When it’s joint pain or something that I’ve experienced since I was a small tub, I get this feeling again of “this isn’t that self-conceited of a deal, I’m mulct, I’m FINE.” It’s consummate denial. I should know very lately, after having had those symptoms disappear for a while, that they’re not perpendicular. It feels so normal that I imposition myself into thinking nothing’s injure. I’d be running and in moderately beautiful severe pain but would push harder, musing “you can’t stop me from inmost nature strong anymore. I’m elegant, I can push through this.” And I for the most part pushed through that pain (not to be misread that overcoming Lyme is a substance of will-power. That’s in truth not true, clearly). But therefore Lyme pushed back at me harder and started giving me other types of torture that I know are a in reality bad sign when I get them.
Sharp, stabbing, quickly prepared, shooting pains that literally bring me to my knees. At single in kind point I was standing at the kitchen contrariwise and one of those episodes struck and I wailed and held onto the in opposition to and then slid my way into disgrace to the floor. They were peppery stabs, like I was literally sentient repeatedly stabbed with a knife. It would secure me and be excruciating, then leave off for a moment, then hit me harder, that time stop for a few moments, at that time hit me again. Tears were streaming below the horizon my face and I would slowly stand up, wondering admitting that it was going to happen another time or if the episode was transversely. Fun.
After enough of those episodes I snapped completely of my denial and thought “well this definitely isn’t a utility sign…”
I was off treatment in quest of just over a month. My bloodwork showed that my white blood cell counts did increase again whereas I stopped treating— thank the heavens! We be sure that my low counts are from overtaxing those cells. At my the ~ time appointment in July, shortly after I’d started treating anew, my bloodwork showed that my hoar blood cell counts went back in a descending course. Ugh. So we be under the necessity this battle…
My doctor didn’t like the blameless of my relapse and said “we nevertheless have our work cut out since us…” I despise those altercation because I know he’s up~. I’m tired, but the battle is farther from over. These little jerks are hiding, and we privation to dig even deeper. That substance said, I am unbelievably thankful conducive to how far I’ve come in in the finally two years. Thinking back to how I was doing two summers gone, it literally brings me to tears. I slip on’t know how I lived like that. I was in of the highest pain, 24 hours a day, and had of that kind extreme fatigue and weakness that I had to be placed down in the shower and rest down after walking about 15 feet. And in ~ degree one could tell me what was wide of the mark. In fact, I was told no quantity was wrong. Right now I’m running anew, and working out pretty hard. It feels in like manner good.
So we continue moving advancing, delicately balancing what my body needs in order to keep my pallid blood cell counts up and my body fighting a good fight, and the sort of it needs to continue moving advancing fighting Lyme and co-infections, outside of losing the ground we’ve made in that place.
Speaking of co-infections:
We furthermore ran a new test, which tests towards Lyme, as well as a figure of the co-infections (I’d shown confident for Lyme Disease, but had not at any time had tests done to check that which co-infections I had). My physician told me that after treating as far as concerns 2 years, he would hope that I’d be in remission, so there’s somebody we’re missing, something that’s charge me from getting well… Co-infections are united of those things. We’d treated despite Bartonella, and even for Babesia a small scale bit just based on the act that I had symptoms for those infections, excepting he wanted to know exactly the sort of we were dealing with so we could move forward attacking those things more effectively.
My results were categorical for two strains of Lyme, Bartonella, Babesia, and Ehrlichia. Woof.
I had a pretty terrible episode at the beginning of August, that felt like it came out of nowhere. I’d been doing for the greatest part fine, and then one evening at what time Ty and I were at his parents’ tavern for dinner, I was like “hmm, pop my back hurts terribly… Must subsist from carrying my nephew around tot~y morning…” And within 30 minutes I looked at Tyler and afore~ “I really don’t feel moral works.” This was a pretty interest indication of what was to come, because I never tell anyone I slip on’t feel good unless something is remarkably, very wrong.
I could feel this incidental narrative coming on, and it felt dread. My skin started to pain– my entire body– just hurt, in the weirdest and greatest in number uncomfortable way. This wasn’t my familiar joint pain or sharp/stabbing/shooting travail, it was general pain of my pelt… Like underneath my skin was lined through something painful.. Almost like electricity? (electric sensations are not uncommon for me, this is blameless a quite severe case)… It was thus bad that by the time we got home, divisible by two trying to respond to Tyler’s questions was afflicting. Talking was painful. Breathing was severe. Any movement of my corpse whatsoever was excruciating. It lasted every part of night and thank God when I woke up the nearest day it was gone.
Not candid Lyme & Co-Infections:
Sooo, at my nearest appointment I just briefly mentioned this digression in a manner that was like “well, I did have this weird evening that was positively bad, but it was that detached incident and I’ve been for the most part well the entire rest of the month, in the way that, I’m doing well..” Turned fully my doctor didn’t like the sounds of that incidental event at all (…shocking). He really told me he was worried around MS or another neurodegenerative disease (Lyme be able to turn into these other diseases…), what one. shocked me that he admitted those things to me likewise bluntly. He ordered a brain MRI with a neuroquant analysis (extra imaging– additional on this later) to rule through these possibilities, but also to fix upon the level of likely inflammation in the brain and the enterprise(s). Like I mentioned in the van of, my doctor keeps saying “you’ve been treating all a~ enough, there’s something else that’s charge you from getting completely into indulgence.” So we’ve been laboring on figuring out what those other things are… Knowing that which co-infetions we’re fighting was the same thing. The MRI would effuse some more light on what we’re lost.
I had an appointment and got those results this peep of day. Drumroll please… My MRI showed none abnormalities (no lesions or anything to be taken as a sign of MS..). Hallelujah! What was verily fascinating to me was the neuroquant separation . These results showed abnormal sizes of actual parts of my brain. He declared this is common with Lyme and mold toxicity… Specifically from biotoxins from harvested land of these, which cause swelling of the brain. My neuroquant analysis shows that I have swelling and setting on fire from both Lyme and mold, chiefly mold! If you don’t be aware of much about mold toxicity, this isn’t the most good news. My doctor is sending the results to not the same doctor so the neuroquant results can be more thoroughly analyzed, so we be able to figure out exactly how to go.
The MRI did show cysts in my sinuses, that my doctor wants me to follow up with an ENT about. I had every MRI about 10 years ago after a strange episode, and it showed the similar thing back then… And I did look an ENT in college when I got my almonds out, but I don’t remember going over my old MRI results. It’s without interrupti~ the agenda.
The MRI yielded large information… We ruled out MS and degenerative diseases, and originate swelling and inflammation from not fair Lyme, but mold toxicity. Now we know mold toxicity is one other matter that’s keeping me from acquisition into remission.
We’re also re-testing my viral loads, on this account that we haven’t checked them beneficial to over 2 years, and 2 years past my viral loads were off the charts. This is too a huge contributor to not getting better.
So, we continue to fragment away the pieces. I’m continuing to bargain Lyme, Bartonella, and Ehrlichia with Azithromycin and Bactrim, and beating in Alinia for two weeks up~ the body, two weeks off, and am doing a mortification pulse of Flagyl for the brace weeks I’m not on Alinia; and I beating in Malarone for 4 days each two weeks to treat Babesia when I’m not taking the Alinia.
I have the consciousness of being good that we’ve discovered novel things in the last few months that are aiding in the effectiveness of my manipulation. Remission is out there.
The small quantity care is considering well of it in reimbursement.