Sweetie had her... well, let's see... second follow up with her LL doctor today since starting on her antibiotics 6 weeks ago.
When asked, Sweetie of course said she was great. But when the doctor then turned to ask me how I thought Sweetie was, I, well, hmmmm.... I'm not really sure. She's doing well, I guess. Yeah.
Funny. As I said in this post, after reading Cure Unknown, and recently listening to a Lyme expert speak on his personal connection to the Disease (through the devastating, years long plight of his daughter), I am just thanking my lucky stars that Sweetie's symptoms have never been anywhere near that bad. On the other hand, though, it was just a few months ago that I was feeling like a crazy person trying to find somebody, anybody, who would recognize the illness that I saw my daughter was experiencing and go about treating her in an effective, appropriate manner.
A) She's sick! This isn't right! Why doesn't anyone agree with me and help us out?!
B) Is she feeling better? Eh. I don't know. She was never feeling terribly, awfully miserable in the first place. It's really hard to say.
My one measuring stick I can truly judge by is the vomiting. In the midst of our searching for answers over the course of the winter, Sweetie's main issue was her vomiting every few weeks. But now? Well... she hasn't vomited since February (knock on wood). So that's one improvement I can see... but her vomiting stopped well before her Late Stage Lyme diagnosis and her new round of antibiotics began. So... hmmmm...?
Beyond that, on the negative side... she still looks awfully tired, almost all the time. Hubby and I see it for sure. Her doctor sees it. Random other people do as well. But we remain frustrated because, really, if you're not looking closely at her, or not looking specifically for it, the typical person coming into contact with Sweetie in a day will not necessarily see this in her. They will not see the dark, heavy eyes. They'll just see sweet, smiling, happy, "great" Sweetie - plain and simple. Or maybe? People just don't want to see her this way. My parents, for instance, don't understand at all what Hubby and I are talking about when we say Sweetie looks really tired. While Hubby's parents, on the other hand, nod silently in agreement when we talk about Sweetie looking tired and unhealthy.
But actually being tired? That's another very gray area. She has never been down and out, completely, truly fatigued. She can happily get through her day, now and always. But does she wake up after a good full night's sleep, yet continue to yawn as she manages through her morning hours? Yes. Does she seemingly more often than before come to rest on/cuddle up to me as her days wind down? Yes. Does she choose to play indoors quietly more often than run around outside being active and hyper? Yes... but that's always been her way. Really no change there. Is her energy level improving? Eh. Maybe? I don't think so? It's really hard to say.
On the positive side, I'm pretty sure I'm noticing a little more color come back into her cheeks. Sometimes, anyway. So that's good. But still, who's to say if that's really a definite measure of improvement. Or if I'm really seeing what I think I'm seeing... sometimes.
And then there's her "foggy brain" issues... if she's even having that. Aside from what I mentioned in my last post, it seems to me that she's having some difficulty with finding the right words sometimes. But, then again, she's never had what I'd say is an "economy of words" when she speaks. She usually takes the long way around a sentence/story and, if she gets hung up on a thought, she'll start the whole thing over (sometimes several times) rather than find a "close enough" word and move on from there. But is she getting worse still at this sort of thing? Hmmm... it definitely is a gray area when it comes to figuring out her gray matter.
(I'm really not trying to make a mountain out of a mole hill. I don't want to see that which is not there. Huh. Maybe that's why I also can't recognize any improvements I see in her either. I'm trying so hard to ignore what may be, but really probably isn't, Lyme related issues that I don't see what's truly going right for her.)
What I do know, and am learning more about everyday, is how utterly confusing Lyme Disease is, even to the LL community. In discussion with Sweetie's doctor today, I noted that I finally recognized in Sweetie what her version of Herxing is. To which the doctor responded that that was good, because if she's Herxing we know the medicine is working. But, I said, her Herxing this time around is very different than the definite, really awfully sick day of Herxing she had last summer when starting up on antibiotics. This time around it's much more subtle. Her doctor said, to this, that sometimes the Herx reaction is much more dramatic in a person who is more "newly" infected with the Disease.
"I thought I understood that a person doesn't have the Herx reaction unless they already were in the Late Stage of the Disease," I said.
"It's hard to say," was her doctor's answer.
Am I upset that I seem to be getting contradicting answers from Sweetie's doctor at different office visits? Not really. Frustrated, sure. Was Sweetie already Late Stage Lyme last summer? We thought that's what we understood. But now? Who knows. Certainly by now she is Late Stage, and now is when the right diagnosis matters.
It's not the doctor's fault for not having all the answers for us. I just know that, with Lyme, it's almost all "hard to say" what the true answers are. But working together, and watching for signs of improvement - as subtle or insignificant as they may appear to be - is how we'll move forward, working to get Sweetie back to her healthy self.
One more month on these current antibiotics. Then we'll regroup and see where we are. If no drastic improvement is shown, we'll switch to a different antibiotic.
Here's hoping I can start to definitively state I see improvement in my sick/not really too sick Sweetie soon.
And so the story continues. At this point, it certainly is hard to say how it all will conclude...
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