Yesterday was a big day for me. The feeling of walking like it’s a natural motion and the feeling of standing like it is a stable position, have revolutionized my world. I really believe I will heal. Not just get better, or get well enough to go on with my life, accepting some amount of limitations as the infections drag on and on. But heal. Completely.
Despite this new found hope, I can’t feel those feelings anymore. Nor can I quite remember what it felt like before. I can describe them both, but I can’t recreate them in my memory. I am aware of how difficult it was to stand and to walk. I can remember this from 6 years ago, and 3 years ago, and even this summer at my wedding when I was so happy and secretly wishing I could do the whole thing sitting down.
In many ways, this is a good thing. I can remember that I was in extreme pain with unrelenting, blinding headaches. But somehow, I can’t remember how they feel. I’m sure they would be familiar if they returned. I still get headaches that hurt, still get light sensitivity. They can knock me out, incapacitate me. But they aren’t as bad as the headaches I got in 2007 and 2008. I am aware that they aren’t as bad, but I still can’t quite remember the old pain. It’s probably a good thing.
With my new hopefulness, I’m bouncing around in my mind about what I should do next in terms of the coiling program. Should I refocus the Bartonella treatments even more on my head and spine? I’m definitely herxing more with the changes I made last week. In fact, the pain and pressure in my chest that I described three days ago (in Jumpy) hasn’t gone away. I had a break from it for a few hours yesterday, but it came right back in the evening. The pain diminishes somewhat with magnesium citrate, but it doesn’t really go away.
I had a lot of other pain yesterday, most notably for a few hours in my newly-stabilized legs. It seemed unfair that they should be both better and worse at the same time. My heels hurt and my ribs too, in the bones. My muscles hurt for a little while as well. I’ve had recurring pain in my sacrum and the surrounding areas for several days.
My abdomen is very swollen again. Yesterday I looked pregnant, today a bit less so. Yesterday, my pants didn’t fit, that’s how swollen my abdomen was.
I’m tired and my mind is jumping around all over the place. I can’t quite settle in to what I’m trying to do. I’ve been trying to start this blog all day, sitting in front of my computer and finding a million other things that need to be done. Anything that takes less than five minutes, I can handle. So I’ve been up and down and getting lots of random things done. I feel distracted. It’s been like this since the jumpy feeling started a few days ago. I’ve even made mistakes in my coiling protocol. Weird, huh?
The restlessness has a fine-tuned corollary. I’m making a lot of mistakes in my typing (which I attempt to fix before I publish a blog post or send an email). I’m also having word choice mistakes and difficulty recalling words when I speak. (“Can you grab me the thing, you know, that thing?” instead of “Can you pass the salt?”)
On top of the restlessness, I’m tired. Not sleepy exactly, and not the severe exhaustion I’ve had in the past, but tired. Like I could use a rest if I settled down. Yesterday I managed to take a nap. That’s what temporarily relieved me of the chest pain.
I’ve been able to sleep at night, even though I have a hard time settling down to bed. But once in bed, I can go to sleep within thirty minutes. I’m still having night sweats of the mild and hot variety.
I’ve had moderate headaches on and off. They seem mostly of the tension headache variety. Closing my eyes and rubbing the painful parts of my head helps ease them up a little. At the other end, my urine smells like Lyme-pee and my feces are an odd odor that reminds me of when I came back from China with diarrhea that didn’t go away for 18 months. No diarrhea this time, in fact, it is closer to constipation, replete with abdominal cramps and tenderness.
My temperature has been off. My hands get super cold. So do my feet. Then I have something warm to eat or drink and I get overheated for a half hour…before I get cold again.
All of these symptoms seem like the hodgepodge of Lyme and Bartonella herxes. They are unpleasant and they mess up my ability to function to some degree. But they aren’t as debilitating as they were earlier in the coiling process or when I was on antibiotics. I assume this is because the load of active bacteria has diminished significantly. I seem to be able to handle the increase in frequency of Lyme coiling sessions to twice a week, though I suppose the chest pain is a sign that I’m not getting the toxins out as fast as I’m killing spirochetes.
For the most part, I don’t seem to be suffering as much from the infections. The abdominal swelling seems to be the most obvious sign of Bartonella. I still have lots of noise and stiffness in my joint, mostly from Lyme.
So far, I’ve described one interpretation of my symptoms. The other is that as I reduce the infection load of Lyme and Bartonella, some other infection is rearing it’s head. I have Ehrlichia in my mind as one culprit. The other is Mycoplasma fermentans. I’ve been doing a little research into each of them. I know a more about Ehrlichia at this point. I’m trying to gather enough information to put together my own cheat sheet of symptoms and figure out how to treat it. Mycoplasma is much more complicated. I had no idea it was implicated in Gulf War Syndrome. I have much to learn.
In any case, I added 1 minute of coiling for Ehrlichia to my rotation today. I want to see if anything changes. I think the chest pain got worse while I was coiling. It’s definitely worse than it was earlier today. I just can’t tell if it started during the coiling or shortly thereafter.
I just went through my medical records to discover that I had never been tested for Ehrlichia or M. fermentans. I’m operating blind on these two. For no good reason, I decided to see if coiling for Ehrlichia has any effect. I’ll try M. fermentans after that.
Anyway, I did the full coiling protocol for Bartonella on Wednesday. I coiled morning and evening for Bartonella then did a full body scan for Lyme on Thursday. Today I did another full coiling protocol for Bartonella.