Wow, so it's been over 3 years since I've posted anything here. I guess it's time for an update if anyone's still reading this.
My health seems to only be deteriorating no matter what medications I try, and I've tried them all. I've done 2 rounds of IV antibiotics, countless oral antibiotics, natural and homeopathic remedies, OTC remedies ... you name it, I've tried it. I was recently on Samento and BLt for 3 months, and all of my symptoms got worse. My doctor and I couldn't tell if it was a herx reaction or actual worsening of symptoms, so I stopped those medications.
Nothing got better.
I'm now on 2 oral antibiotics: Omnicef and minocycline. This will be another 3-month trial. 3 weeks in, and I haven't seen any improvement yet. In fact, the detox medications my LLMD had me on (Burbur and Pinella) made the migraines worse, so I had to stop taking them. I realize sometimes you have to suffer through the worsening in order to get better, but with my current symptoms it was just too much.
The joint pain is the worst it's ever been. My fingers hurt so badly that some days I can't type. Other joints are also problematic, but my fingers seem to be taking the brunt of it. I have some kind of nerve issue going on in my lower back that causes random pain. It's there right now, and it essentially makes it so no position is comfortable. Then there's the extreme fatigue. On a normal day, I take about a 2-hour nap even if I got a good amount of sleep (I'm currently on Ambien because some immune factor on my blood work was low, and the doc says this immune factor regenerates when you sleep so I clearly wasn't getting solid sleep even if it felt like I was). If I've been active, the fatigue worsens, sometimes even after just a short while on my feet. Then it's a 2-nap kind of day. There's lightheadedness, tinnitus (my left ear is practically screaming at me all the time), swollen lymph nodes, migraines, general aches and pains, stiff joints (no matter what position I'm in, when I get up, my body just doesn't want to move), and random things that come and go at random times. Last night it was a tight muscle in one foot. So strange. I stood up and my foot just wouldn't move properly and I could feel the pull in the muscle.
That list could go on for a while, but you've probably stopped reading already. I'll just leave it at "Lyme sucks." I'm not sure I'll ever know if it's still Lyme, or maybe a co-infection, or perhaps the immune damage is already done to my body and can't be fixed. Whatever it is, it certainly makes life difficult.
I stopped working a while ago. I'll save the disability spiel for another post. For the moment, at least that's one less stress to deal with. Right now, I'm just working on the latest round of antibiotics and waiting for the results of a lumbar x-ray to find out what's causing the issue in my back. None of my current pain meds (I take tramadol and gabapentin daily) are helping it. Heat doesn't make it any better. Nor ice. Massage makes no difference since the pain isn't coming from a muscle. Fingers crossed the x-ray gives a hint of the cause.
Hopefully future posts won't be so negative, but this is just to give a general update on the last 3 years. I've been hoping to be able to post positive news. Maybe one day soon I'll have some.
