Okay, I know this is way overdue. I wish I had a better excuse than "I haven't felt good"... or actually just any other excuse for variety's sake, but alas, such is my life.
I've had the weirdest and most unexpected issues over the last few weeks. It all really started in the last few days of January. After 6 weeks on most of my new meds and 4 weeks into the antibiotics, during which time I felt mostly the same as usual or maybe a bit better, all of a sudden I found myself in an epic crash. The last time I remember feeling so helpless was in April of last year--during the last two weeks of tax season when I had to spontaneously quit my job--which certainly did not seem like a good sign. I was
exhausted, physically and mentally, couldn't get out of bed without extreme effort and pain, and was running a low fever off and on. This lasted about 4 days. Though these symptoms are hardly unusual, it is VERY rare that they are so severe for so long, so after the 3rd day I contacted my doctor about it, just to make sure I didn't need to be seriously concerned. Truth be told, I expected that times like this might happen as part of the treatment, so I wasn't especially worried at the time. Let's face it, no one said Lyme disease would be easy to treat!
However, my doctor responded with more concern than I anticipated and thus began the quest for an explanation. He was worried at first about Steven's-Johnson Syndrome, which is a very rare and potentially life-threatening condition that sometimes presents in Lyme patients or other infections and manifests as a rash (like my detox rashes) and fever. Long story short, we ruled this out eventually, thank goodness! However, the rashes in conjuct with the other symptoms may indicate a liver problem or other issues with the toxin elimination process. (Quick refresher for those who may not remember--while treating an infection with antibiotics, the infection tends to fight back by releasing toxins, fungi, etc into my body, which can cause untold other horrors if not properly treated. A HUGE part of my treatment regime is detox related to address this issue.) They sent me to get some blood tests done to test liver function and recommended that I stop the antibiotics immediately until we could determine what was causing the problem. That's when the real fun started.
As soon as I stopped the antibiotics, I noticed my energy level improve almost immediately. I was able to get up and move around again. I could do the dishes for short periods of time. I still wasn't 100% but I could semi-function again. Unfortunately, while my energy improved, my mental/neurological issues multiplied tenfold. Now, it is normal for me to feel a little "fuzzy" or disoriented, have trouble remembering things or concentrating for long periods, etc. Still, usually I can tell when I'm feeling out of it and I have learned to just not do certain things (like cooking, doing taxes, or trying to communicate) when this happens. When the neurological problems started, it was simple things--I left food in the oven and forgot I was cooking something until hours later, I kept misplacing things I had been using only minutes before, I would forget to eat or take my meds on schedule. But I could tell over time it was getting worse and worse. After burning 3 meals in a row because I kept forgetting I was cooking and almost catching the microwave on fire because I forgot to take the metal fork of my plate, I realized this was getting way worse than ususal. By now, it was the weekend and my doctor was out of the office, so I determined to survive until Monday. One night, it started getting really scary. After feeling jumbled and confused all day, late that evening it was almost as though I could feel my mental fibers snap. I only have vague memories of that night still, but I remember it started shortly after Paul had gone to bed. I was lying in bed with him, hoping maybe I could sleep, and I remember suddenly feeling an inexplicable compulsion to get up. I wandered into the living room aimlessly, feeling completely unable to control my body. There has been one other time in my life that I don't know how else to describe other than to say it felt like some other spirit was possessing my body, and not in a good way. That's what this felt like. I was semi-aware of my actions, but as if I was watching them from some remote corner of my head. I literally spun in circles for several minute (don't ask me why) just because it seemed like the right thing to do at the time. I started halucinating--dark shadows in the room looked like snakes and eyes watching me from the corners. I completely lost the power of speech. I ended up back in bed (I don't really remember how I got there) and was rocking back and forth, tearing at my clothes. Paul woke up and tried to figure out what was wrong. I couldn't form words. I eventually managed a bizarre sort of baby talk, mostly garbled sounds but every once in a while I could get a single word out. I'm sure most of it sounded like nonsense to him. Something about snakes and circles... I felt like I was being pushed out of my own brain and I was desperately trying to communicate but even I could barely figure out what was happening, and I'm sure I wouldn't know how to explain it even if I could. This is the kind of experience that I have to say unless you've experienced something like it, you will probably have no idea how to interpret what I'm describing. Suffice it to say it was one of the most bizarre and terrifying experiences of my life.
I emailed my doctor on Sunday afternoon (for those keeping a timeline, this was Feb 6th) explaining, as best I could, the whole story, knowing he would get it first thing Monday morning. I was slightly more cogent on Sunday, but still very disoriented, and by Monday all the really scary stuff was gone. I was still a little dizzy and had a lot of trouble concentrating, but I was able for the most part to go about my normal day. We had scheduled an appointment for me to go into the office in Ft. Collins on Tuesday to run more tests. Paul unfortunately got called into a meeting in Colorado Springs that day, but given my shaky mental state I did not remotely feel comfortable driving the distance myself, but a dear friend offered to give me a ride. (Thanks again! ;-)) We ran several tests using the muscle testing method to try to determine what systems and medications were working or not. It was a very informative appointment but it still didn't provide any really clear answers. There are several possibilities that could theoretically explain my bizarre symptoms, including a toxin issue, symptoms from possible coinfections, unusual reactions or allergies to medications, having come down with a new cold/flu/something, or some combination of all of the above. Since the really severe symptoms were gone, for no apparent reason, it was very difficult to really explore what caused them. They gave me some new medications to add (now I'm up to 40 pills/day!) and told me to ramp up slowly with the new stuff and then add the antibiotic back in.
Today was my second day back on the antibiotic. I can already tell my energy feels sluggish and I'm having more trouble with mental focus than ususal. I know this is all part of the process, and I am very encouraged by the way my doctor has responded, still I really hope experiences like this aren't just the way things have to be. I miss my life, even the lame tired version I've been living for the last few years. Right now I'm just praying God heals me quickly. And that I can learn from this whatever I need to.
Here goes...
