Once again, I apologize for my inconsistency as a blogger. But also, sorry not sorry, because this was one crazy month, and it’s not really over yet.
That said, I did want to give a little update, because I had an appointment with my LLMD yesterday. Before I even get into the appointment though, I want to fill y’all in on what’s been going on treatment-wise here lately.
I visit my LLMD every two months. At each appointment I am given a new protocol, which is actually kind of like two new protocols, because it changes monthly. With each new round of herbs, there is the potential for a herx. (You can read more about what a herx is in this post.) What I understood from my own research and from talking to other Lymies is that I needed to be herxing to know that I was healing. Of course, there are some people, I learned, who just don’t herx, but that felt more like the exception than the rule.
Well, I didn’t herx. (Of course…) At least not in the way I expected. My emotions were alllllll over the place, and it turns out that this could have been caused by some Bartonella die-off, but it was not the herx I was expecting. I wasn’t any more tired than usual. I wasn’t in any more pain than usual. Everything just felt…usual. And that’s really saying something considering the fact that we moved in the middle of it all! I should have been way worse off than I was!
So naturally, anxiety-prone worrier that I am, I decided that “oh my gosh this protocol isn’t working and I’m going to be sick forever nothing can cure me how do I tell my doctor she’s going to want to put me on antibiotics but I don’t want to be on antibiotics ugh I guess I’m just doomed to live this way for the rest of my life.” It was totally not at all dramatic ~insert eye roll here~.
Anyway, I started researching and actually found some really interesting alternative treatments that I was prepared to discuss with my doctor in the event that she couldn’t give a good reason as to why I hadn’t seen any kind of changes. Thankfully, it didn’t come to that (I was really nervous about bringing them up. You know, that balance between being an informed patient and coming across as a know-it-all who doesn’t trust her doctor…it can be a fine line to walk!).
Almost the first thing she said to me when I sat down in her office was “so nothing’s happening huh?”. She’d obviously already looked over my symptom questionnaire, to which I’d given almost identical answers as my last visit. She followed that with, “have you been exposed to any mold?”
If you’ve been following me for even just a short period of time, you know that the answer is a resounding yes.
I gave her a brief overview of the past month, the mold in our old apartment, moving to the new apartment, obsessively trying to wipe down, steam, or douse in vinegar and tea tree oil anything and everything that could hold mold spores…and when I finished, she told me that moving from that apartment was the single best thing that we could have done to aid in my healing process.
That was so validating to hear! Moving was (and still is because we are nowhere near done unpacking) a long and frustrating process, and despite the fact that Hubs and I both agreed it was the right decision, I frequently found myself wishing we’d just stayed put.
She went on to say that mold and mycotoxins can cause tons of inflammation and can impede or even halt healing altogether. She said that often when they don’t see progress in treatment, mold is the culprit. There are some Lyme clinics that won’t even accept you as a patient if you are living in a moldy environment! That’s how much they believe that mold can hinder healing. Needless to say, our healing decision to move was even more healing than we realized!
She also assured me that not everyone herxes. In fact, she said in her experience, it was about 50/50. I still find that a little hard to believe, as everyone in the Lyme community talks about, dreads, and commiserates over the dreaded herx, but I’m choosing to trust in her expertise instead of my overuse of Google.
So whether mold or the fact that I am simply one of the lucky ones who doesn’t herx, I left her office feeling better about my lack of reaction than when I arrived. It is still frustrating to think that the last two months of supplements and rest may have been a waste and that I wasn’t actually moving towards healing in the ways I thought I should’ve been, but I strongly believe that no experience is wasted if we are willing to learn from it. I learned a heck of a lot about the importance of a clean, mold-free, healing environment. I learned about some new alternative treatments for Lyme that I can pursue in the event that my current protocol just doesn’t get the job done (having options is always good). And finally, I learned that sometimes healing involves hard decisions, decisions that don’t necessarily have the stamp of approval from everyone you’d hoped, decisions that create more work and stress, decisions that really just suck. But if a hard decision gets you one step closer to healed, it is worth it every time.
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