I think I’ve finally hit “the moment” in my treatment.

First: Yes, I have heard the news about the Whittemore Peterson Institute, but I don’t want to dampen my good news with such a topic, though it troubles me greatly. I will say, however, that I stand by Dr. Mikovits and anxiously await her new endeavors.

Secondly, it’s so.. conflicting, for me to write of my own good news in the wake of so many myalgic encephalomyelitis deaths. We’ve had five in just over a month? Maybe it’s the result of me being more in the community that I hear about it more? I’m not sure. :( But the death rate of 1 in 20 is beginning to sound like a myth, at this point.

Such is the reason why we cannot afford these petty arguments amongst the best researchers and institutions that we have on our side.

But my main reason to write is that…

I AM FEELING SO MUCH BETTER.

I expected things to have a good spell and then back down, as is common for us “Lymies,” but nope! The Bactrim is treating me very well. I suspected it might, because it’s in the sulfa class and I respond well to those, for whatever reason, but this is truly remarkable. He wanted me on Bactrim DS (double strength), but as is usual for me, I could only tolerate the normal dose; taking one DS tablet put me in a state of being unable to move for four hours. Since when do antibiotic cause such drowsiness???

The herxing is mainly dizziness (which seems standard with any antibiotic I start), and I get anxiety after my night Rifampin dose like I used to a while back–it’s not severe enough to cause me to not take any of my medication, though. The seeming-optic-neuritis-thing went away after about a week, thankfully. I’ve been coughing  a lot more than usual, which is slightly troubling, and my eye twitches are happening more frequently? My mid-week flares (that are still falling from Tuesday-Thursday) are still present (headache, fatigue, dizziness, blood pressure problems, shin pain, mild fever) but not as severe, either! I had a light dotted rash on my feet the other day, but it was very faint. And the cardiac complications I’ve mentioned in previous posts, are now gone! Was it just a herx from whatever bacteria had caused it to worsen? Whatever it was, it seems I’ve recovered from it, but I see my cardiologist on Friday for my echo, and on Thursday I get my bloodwork done to check my immune system, kidney, and liver function.

 

I’m definitely not getting worse, so I’m inclined to believe the antibiotics have been/are fighting whatever new infection I got from those new fleas! Yay!

The other day I went to Walmart, with no sunglasses, and no earplugs, and I walked on my own, with no cane nor wheelchair nor mobility scooter to help me. All right, I leaned on the shopping cart, but who doesn’t? It was a huge moment, and it shows me where I will be headed once we kill the rest of these critters. I haven’t been able to stand up and shop for myself in over a year… And there I was, walking and standing in a supermarket for twenty minutes! That is huge!

Generally speaking (evening out the good days with bad days), if I were to rank myself on the ability scale now, I would say I am at 40% physical ability, 45% cognitive ability, and 50% symptom severity. Since my last checkpoint in May, that’s twice as good physically, 10% better cognitively, and 22% better symptom-wise! Also, if you look at the list I made then, I’ve gotten goals 1 and 2 out of the way, I’m working on doing 3 right now, and hopefully will be getting to 4-5 soon!

I’ll probably post next with my lab and echo results, etc., and who knows, maybe even more good news. To my dear readers, remember to be gentle with yourself; your body is doing the very best job it knows how.

a rainbow at night

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