I wanna talk about something that I think bothers a lot of Lyme patients... I'm not really sure where to start.
First there is the thought of what am I feeling (I've talked a little bit about this before)? Is this depression that is making me down? Am I just really sad? Is it "that time of the month" again? Or is this Lyme? Am I having a panic attack or is Lyme doing this to me?
These questions go through my head a lot and it's maddening! I'm constantly wondering what Lyme is or isn't doing to my body because it can cause so many things, if you haven't read my post on symptoms go ahead and see for yourself.
But I recently had something else happen to me. I called in a prescription refill to a pharmacy (one of the 4 I get medications from), and because I take so much I forget about that one. Well, the pharmacy never got the prescription refilled, and I forgot. This perscription is called Donepezel. It is used to treat early on-set Alzhimers and Dementia patients, that are in the beginning stages of losing their memory, or ability to read or having brain fog issues. Or it's used for people like me, who at one point completely lost the ability to read. Who forget and have a constant brain fog!
I was put on this back in Febuary or so. It took a while but I have slowly gained my reading ability back, the fog is pretty much cleared. I thought it was because I was getting better. But I was off of Donepezel for about 3 weeks when i had that mishap with the pharmacy. My brain fog came back. I couldn't read scriptures in church, the words were just running off the page again!
I immediately realized I was not on that medicine and quickly figured things out to get back on it.
But I am really bothered now... If my brain fog and inability to read and all those crappy forgetful symptoms came back, was I really getting better? Or was it just the medicine?
It makes me wonder. Am I even winning with antibiotic treatment? Or is it just the other medications that are suppressing the symptoms that are winning? Is Lyme still rampant in my body? And then I wonder, does this just mean I will have to be on mess the rest of my life?
You see the spiral I go in? If all those symptoms came back, is this even worth it?
It's se troubling thoughts, and I don't want to get down and discourage myself, but I have to be practical. I have to think as logically as my brain will allow me, or I guess as the Lyme in my brain will allow me.
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| How I feel defending Lyme sometimes |
I imagine my fight against Lyme something like a basketball game. Sometimes you are playing defense and sometimes you are playing offense. I am taking Antibiotics for offense against the Lyme, and then I take other medications and supplements to combat the symptoms, like a defense. I quit gluten and sugar, also a defense. When I sweat in a sauna, I picture it like an offense.
So when I started to notice my Alzheimer symptoms coming back after not having some medicine, I picture it like the third quarter of a game. The third quarter can make or break a team. I picture a team, the home team, thinking its got the visitors (Lyme beat), at halftime. They are head, they seem to be managing their offense just fine with their stellar defense. But Lyme comes out after halftime with a huge burst of energy, and it turns out Lyme was holding back a massive offense the whole first half to wear the home team down. I feel sometimes that this is whats going on in my body.
I know a mantra my coach always had through high school was "Defense wins games", and I believe that. I really do. I love defense! But I also know you can't win if you don't put the ball in the hoop, and you can't put the ball in the hoop without some sort of offense, or game plan.
I talked to my Doctor. He has told me that there is really no way to tell if it's really the antibiotics (the offense) that are working or if it's just the other supplements and medications (defense) suppressing the Lyme. It's not very comforting to hear that. But it is something you have to get used to as a Lyme patient. That even your LLMD doesn't know everything about the awful disease ravaging your body. My doctor said I have to just "trust" that it's the antibiotics.
I want to trust. I do! I want nothing more than to believe this almost one year fight has made a bigger dent in the Lyme then it sometimes feels.
But then I start to try and take myself off some of my symptom fighting meds. I take a sleeping pill at night, I can't go to sleep usually without it, no matter how exhausted I am, I lack certain body chemicals and hormones that allow me to go to sleep at night (thanks Lyme). So a few nights ago, I had stayed up a little too late, I had to still be up early the next day, so to take the sleeping pill would mean I wouldn't be able to wake up the next day when I needed to. So I went to bed without it. I didn't sleep all night. It is maddening to me, who is usually very skilled at falling asleep, anytime anywhere, to lay awake feeling so exhausted, but unable to sleep.
This was a symptom on my mission. Before I was diagnosed. And without the defense, it all came back...
It just goes to show that trust is a must with fighting Lyme. I feel like it is easier to trust more blindly when the trial, or whatever is short term. I think that's why I'm having trouble seeing that right now. Because I've almost been fighting for a year and I still have another year (maybe more), to go. The longer you have to endure something the harder your faith and trust is tried.
I don't want to doubt, but things just seem to be dragging in the wrong direction right now.
One thing is for sure, I don't want to let the visiting team get anymore legs up. That's not how I play basketball, and it's not how I plan on beating this illness.
-The Lyme Warrior
