The Latest Update from Seattle

I had my 8 week appointment in Seattle last Friday and things went really well. Basically what I do at appointments is go over current symptoms with my doctor, have my vitals/reflexes/balance, etc. checked & documented and get the treatment plan put together for the next 8 weeks. I usually also have blood work done, (antibiotics are hard on the body, so it's important to check a lot of different things to make sure everything is on track.) It's important for me to remember that while it may not always feel like it on a daily basis, I have been making steady progress over the last 13 months. I try to think of setbacks as being temporary and when they happen, it just means we may have lost a battle, but we're still winning the war. It's hard to believe, but it's now been over a year ago that I was diagnosed with Lyme, and have been making trips to see my wonderful doctor in Seattle! NOTE: (In the picture below) my doctor really does have a name on the door... I photo-shopped it out since my treatment plan is fairly controversial, and I'd like to help protect my physician's privacy.

Since I have been responding really well to Alinia and the combination of other antibiotics/supplements that I've been on since December, we're going to keep things the way they are for the next several months. After the first few weeks on this particular mix, (which were really horrible weeks!) Bryan and I began to notice that my energy has been steadily improving. Over the last year, it has been really difficult for me to do simple tasks like laundry, sweeping, vacuuming or doing the dishes. During that time, I have had "bursts" of energy that have lasted sometimes several days, but they have always been followed by a "crash" that usually involves me spending several days in bed. We have noticed that especially over the last few weeks, I have had significant, steady energy and have been able to be up and out of bed in the morning, and able to do housework, laundry and other daily tasks for several hours at a time. It has been so wonderful. The one drawback has been that I have had a lot of nerve pain in different areas (very common in LD.) The pain tends to migrate from place to place and may be a result of herxheimer, which I've discussed previously. Basically, a herx, (even though it's no fun,) is a really good thing, because it means that the antibiotics are killing the bugs! None of the pains are new, they are the same symptoms that I've had over the last six years. The difference is they are sort of "fast and furious"...they come in much quicker succession and last a much shorter time than when I've experienced them in the past. That's also very common in an LD herxheimer reaction.

My doctor was ecstatic with the results of my bloodwork (everything was "normal" for the first time since I've been going to Seattle) and my reflexes and balance tests were all significantly better than they have been in the past. For these "tests" I have to do all these different little things, like holding my arms and hands straight out in front of me, standing on one foot, tight rope walking in a straight line, walking on my tip-toes and standing still with my eyes closed, (individually, not all at the same time!) There are a whole bunch of them, and basically they are designed to show problems with balance or equilibrium, tremors and any other CNS issues. They sound really simple, but believe it or not, some of them have been very difficult for me over the past year. This time, the only one I struggled with was standing on one foot with my eyes closed. I'm still having a bit of a problem with my balance on my right side. I guess my eyes have been making up the difference, so when they are closed it's very difficult for me to stay balanced. Having problems with this while standing on one foot is significant improvement over January 2009, when I would sway and almost stumble while standing still on both feet with my eyes closed.

The other significant improvement was that I was cleared for very light exercise, sometimes referred to as  "movement therapy." It's not really exercise, but keeping my body moving and starting to use my muscles again. Basically, I'm not supposed to do anything that increases my heart rate, which is pretty counterintuitive, since we learn from a young age that it's all about getting your heart rate up. I'm also able to do light weight training. When I first started all of this last year, my doctor had told me NO MORE WORKOUTS! Which wasn't a problem, since I barely had the energy to get out of bed each day. But, as a result of laying in bed and not working out over the last year, coupled with side effects of some of the medications that I've been on, I've gained 30 lbs. and feel like I've lost all of my muscle tone. To add insult to injury, none of my clothes fit me right now. Yeah....that's depressing. :) Anyway, now that I'm showing signs of substantial improvement, I can start to work back towards trying to be healthy. She wants me to start with 10 minutes of casual walking on my treadmill every day. Then after a couple of weeks, add one more minute a week, eventually working up to 20 or 30 minutes a day. It sounds ridiculously simple, but I did it this morning, and it was challenging for me. It also felt really good, and I think the small goals are great, because they're doable even if I'm having a bad day.

I'm really excited about all this good news, especially since my doctor said she thought that I was getting to the top of the mountain, so to speak. Hopefully, I'm now on the downward side of things, and the roughest part is over!