Tuesday, December 22, 2009

Small changes

I'm still feeling rather poorly, but I think I'm slowly coming out of the latest herx. The body pain has gradually faded, which is good because I'd been taking an increased dose of methadone and I'd rather not do that any longer than necessary.

The strangest symptom, though, has tormented me on and off for over a week. Nausea. Sudden, intense bouts of nausea. Can't wait for that to go away, I tell you!

Anyway, I saw my LLMD last Friday, and the only change we're making to my medication regime is that I'm discontinuing the Diflucan and starting Tindamax for the cyst form of Lyme. I'm pulsing the drug--two weeks on, two weeks off. I started taking it on Sunday and haven't noticed any terrible side effects, which is nice.

Wednesday, December 16, 2009


Yeah, I jinxed it again. I said that I was feeling better, and now I'm crashing again. Seriously, this little dance is getting old.

The Lyme cycle means that when the bacteria try to reproduce and get killed, I experience the die-off reaction (herx) and feel like crap. Then the herx fades and I start to feel better. And in the case of the last two jinxes, I think I'm making continued improvement due to the Rocephin. And so I start to think, "Hey, this is great! I'm feeling better! Woo hoo!" And then I write about it because I'm at the top of the roller coaster and everything looks wonderful...and then I crest the hill and the herx hits me and whoosh I'm falling back down.

The goal is to make the good times better and the bad times less severe and/or prolonged. I still think that's happening. However, that doesn't mean that the bad times are any fun.

Over the past week, I've seen my cognitive function decline. I can't concentrate as well, and I have started making more speech and writing mistakes. (I just typed "speach" and had to correct it.) I forget things more easily. Sometimes I forget to take a round of medication, which is not good.

The body pain is also increased. The new methadone prescription isn't keeping up with it right now. My hips ache to the point that standing, sitting, and lying down are all painful. Walking hurts. My back hurts. My fingers hurt.

And I'm tired. I'd finally gotten used to getting up early-ish, but now I'm back to sleeping 12 - 14 hours a night. Which isn't any fun, because I keep waking up due to the pain.

But I know that this is temporary. It's clearly a herx, and I've just got to take care of myself and allow my body the space and time it needs to get through this. I've got extra energetic support in place. I'm getting a massage tomorrow. And I'm spending extra time in my jammies, resting and cuddling the cats. It's all a part of healing.

Wednesday, December 9, 2009

Christmas giving

I know I say something like this every year, but it bears repeating this year too.

As of Thanksgiving, I've been sick for a full two years. Two years of debilitating symptoms. Two years of putting life on hold. And, what hurts the most, two years of not being able to get out and volunteer for Vegan Outreach. Two years without leafleting college campuses, concerts, and festivals. I miss this joyful work. A lot.

This is where I ask you to help me. Instead of any Christmas present, I'm hoping that you'll donate in my honor to Vegan Outreach. You will be giving me the gift of activism, in addition to helping educate the public about compassionate choices we can make for animals.

And just to sweeten the deal, throughout the month of December, there is a $70,000 matching donation challenge. So whatever you give will be automatically DOUBLED through a matching donation! It's like you're getting a buy-one-get-one-free donation/present for me!

I'm telling you, if you do this, I'll think you're the bee's knees and the cat's pajamas all rolled into one beautiful package.

Tuesday, December 8, 2009

Knock on wood

The last time I posted to say, "I think I might be feeling better," I totally jinxed it and a few days later ended up much worse. So I might be tempting fate here. But...

I think I might be feeling better. Previously I was typically functioning at 20% of normal. I think I'd rate my last week at 25 - 30%. I've been up this high before (never thought I'd think 30% of normal was "good"), and then I crashed. The hope is that someday I climb higher and don't crash, or at least don't crash as hard. And then climb back up.

Of course, 30% is still very limited, and I've learned not to push myself when I am feeling better. But maybe maybe maybe the new combination of medications is fighting off the Lyme and bartonella. And the methadone has, so far, been helpful for the pain. And I'm currently doing two infusions of IV glutathione each week, so I'm keeping my liver and detox functioning happy. And of course the Reiki and other energetic healing has proven invaluable.

Keep your fingers crossed for me.

Saturday, December 5, 2009

Just One Fix

Today I saw a pain management specialist. My LLMD recommended him if I felt I needed something stronger than the Vicodin that had originally been prescribed. I have two categories of pain. The first is this horrible upper back pain that I've had for well over ten years. It's gotten a lot worse since I've been sick. It's with me every minute, every hour, every day.

The second kind of pain is this shooting/hot/cold/electric pain in my bones and sometimes joints. This comes and goes, and is most likely directly the result of Lyme and/or herxing from the antibiotics.

The pain management doctor prescribed methadone. I got the fanciest prescription slip I've ever seen (so many security features!), and I had to sign a long document promising that I wasn't going to sell my drugs on the street or use them more frequently than prescribed, etc. Basically, be good.

I've dropped off the script at Walgreens, and I can't wait to pick it up tonight. At this point, the Vicodin dulls the pain a little, but it never goes away (the back pain, that is; the other pain comes and goes). So I'm happy to stop the Vicodin and see how the other drug treats me. The idea of a pain-free night makes me swoon. I am also supposed to continue with the gabapentin.

But I haven't gotten to the most exciting part of the appointment. I've seen numerous doctors over the last dozen or so years for the upper back pain. Responses have varied from "it's probably an ergonomic issue--change your work space" (didn't help) to "try physical therapy" (didn't help) to just nothing more than a shrug. I understand that it's natural to doubt a 21-year-old complaining of intense back pain, but still. Really.

Anyway, the doctor today pressed on a spot on my neck and asked if I could feel the sensation in my shoulder blade area. Why, yes, I could. He said that I probably had a pinched nerve in my spinal column, and if so, it could probably be fixed with minimally invasive surgery.

I nearly fell out of my chair. Fixed? You mean this could just go away?!

Obviously, I'll want to look into the issue and so my research. And then I'd need an MRI to determine if there really is a pinched nerve there.And then I'd need to choose a doctor for surgery and so forth. So I'm not acting on anything immediately, but it's just so exciting that there might be a clear and discernable cause for the problem.