One of the questions I repeatedly face is: when do I need to coil for Lyme? It turns out not to be a trivial question, as important as figuring out how often to coil and how much to coil each body part during each session.
Last week, I started out gung-ho, ready to tackle my office and the list of things that have been on hold forever. I managed to do quite a bit. My office looks much better than it did before. I’ve answered old emails. I’ve taken care of the still nagging details from moving last year (it really shouldn’t be this difficult to close a bank account). But over the course of the week, I started feeling like something was wrong.
First, there was the lengthening list of Bartonella symptoms: brightly colored urine, headaches, odd dreams, urinary hesitation, worsening indigestion, and the inevitable emotional roller coaster. I expected these and more as I continue to coil for Bartonella three times a day.
Then I started having symptoms that didn’t fit the Bartonella picture: increased sleeping at night, joint aches with the familiar crepitus, then I needed an afternoon nap a few days in a row. I’m perpetually on the look out for Babesia, but these symptoms didn’t match it. Then I reached the unpleasant conclusion that I’ll have no real break from Lyme coiling this summer.
I coiled for Lyme on Monday, the whole protocol in one day. (I skipped the midday Bartonella coiling session.) I had a herx, for sure, but not quite what I’ve come to expect. A few hours after coiling, I started having strange neurological sensations on the right side of my body. I’ve gotten used to having a dull ache on the right side, head to toe, from Lyme, but this was different. I had spots of hypersensitivity in my arm and leg. The skin was so sensitive that if I lightly brushed my arm hair with my hand, the pain was excruciating. My leg was just as bad. I’ve continued to have neurological pain in my arm and leg, though not as severe, yesterday and today. Meanwhile, I have a more normal herx reaction with looser stools, but not diarrhea like it used to be, excessive sleep and grogginess, and an achy feeling all over.
The moral of the story, if there is one, is that when coiling, symptoms are the most reliable indicators of what needs to be treated. It isn’t enough to rely on the “rule of thumb” that coiling season ends during the summer and a new season starts up again in the fall. If the symptoms persist, or return early, responding quickly minimizes the severity of the herxes.
Moving forward, I’m hoping to get away with coiling for Lyme only once per week. I’ll see what the symptoms are like. I don’t really want to do it every three days because coiling so much eats up the whole day. But if I need to, I will.
All in my head
There is a second moral to today’s story. Both the Bartonella and the Lyme herxes are causing central nervous system responses. It makes me sad to think of what these infections have done and continue to do to my brain. I suspect that the Lyme infection is most concentrated in my left brain lobe because I get so much of a reaction on the right side of my body. I’ve suspected all along that the key to getting rid of Bartonella is coiling my CNS because of the neurological symptoms, including all the mood issues.
As a result of pondering the CNS involvement, I come back, again, to wondering if my doctor was wrong about waiting so long to give me iv Rocephin. It’s hard to know, now, if my life would have gotten on track again much sooner if I’d taken Rocephin during the first year after my diagnosis. Back then, I had insurance that would have paid for it to be administered at home. I wonder if I would have kicked the Lyme and Bartonella into submission. I might have had to deal with a relapse at some point, I suppose. Who knows, I might have found myself looking for a coil machine today!
When I start getting upset about the treatments path I took and when I took the different drugs, I try to remember that I didn’t want to take iv antibiotics. They seemed scary and extreme. Instead, I learned about all the things a person needs to do to get rid of Lyme…and antibiotics are only one part of the equation.
The presence of these infections in my head has another psychological component. At this point, I’ve been involved in the Lyme Disease community for over six years. I now have amassed a perspective and quite a bit of experience that I’m trying my best to share. The infections in my head slow me down. Literally they slow down my ability to compose blog posts. They drain my energy so that I’m always behind and trying to catch up on regular life, leaving little time to work on the Coiling For Lyme book that I’d like to share with you as soon as I can write it. And the emotional rollercoaster I find myself riding means that when I have good days, all I want to do is go out and have fun (while also rebuilding my bones and muscles) so that on crappy days like today, I have recent good times to hold on to.