There’s something that happens when you treat Lyme and co-infections called the Herxheimer reaction. You can feel worse before you feel better, even though the treatment is working. Patients usually refer to it as a herx, or herxing. Some people are more or less sensitive to this than others, and I appear to be someone who doesn’t herx much. It may not sound like that after what I’m about to tell you, but there are people who have severe reactions after just one dose of medication. For many people, herxing completely incapacitates them. I’m grateful that it’s not usually that bad for me, so when I share my herx symptoms, it’s more for record-keeping than to complain.
So here are my current herx symptoms:
At first, I wondered if I was having a mild allergic reaction to one of the new meds, because my throat felt narrow. Then it started to hurt when I swallowed, and I realized my throat felt narrow because my tonsils were swollen. That would be Bartonella, which loves the lymph nodes. I think my brain went to “allergic reaction” originally because I wasn’t starting the day that way – it only showed up after my morning meds – I just didn’t consciously process that right away. Once I made those connections and started paying closer attention, it became obvious that this was a direct response to my morning dose of Rifampin. It hasn’t been bothering me much lately though, until today, so I don’t know if it subsided for awhile, or if I was just too distracted by my tingling going nuts.
This pins and needles sensation is what led me to my Lyme diagnosis. I don’t call it neuropathy, because everything I’ve read about that says it’s painful, and this usually isn’t. It is annoying, though, when it’s at its worst. Hard to ignore. It became severe a few years ago, forcing me to push for answers again. With treatment, it had become barely noticeable, but then I started these meds and it came back with a vengeance. I thought it was from Rocephin, because I’d just done 6 weeks of Flagyl with no effect on my tingling, but yesterday I didn’t do my Rocephin infusion first thing in the morning, and this symptom still intensified after I got up. I thought maybe this was from Rifampin too, but today it didn’t start acting up until a little while ago, so it’s probably more likely from a new supplement I started for mold. I took that with breakfast, so that was more recent than Rifampin.
I don’t know, it’s hard to pick these things out sometimes when you’re on so many things. But we were living in a moldy house when my tingling became unbearable. It isn’t there yet today, but it was on that level yesterday. It hasn’t been that bad in a long time. It was all over my face, but right now it’s more in my hands and arms. A little in my feet. Yesterday it was a little sharper in my toes and heels every now and then. Kind of prickly, but not as bad as the time it felt like I was getting static shocks repeatedly. I also had some stinging on the bottom of my feet. Hard to say what that’s from, since tingling seems to be a common herx symptom for me because I’m prone to it already, but I know Bartonella is often responsible for foot stuff. I’ve had that before starting Rifampin though.
And really, I’ve blocked this stuff out once, so I can do it again. It’s the fatigue that really interferes with my functioning. I was exhausted on IV Flagyl the first time, but as soon as I stopped it, I felt great. I was getting up earlier (although I still wasn’t fully refreshed), and my energy was consistent throughout the day. My doctor asked me to rate my ability before treatment and my ability at that time on a scale of 1 to 10, and I estimated that I went from a 3 to a 6. I was very excited about that. Then I started Flagyl again and it knocked me right back down. I seem to get some relief this time around, though, since it’s only for 3 days a week. The effects do linger in the days after, but not as bad. It’s hard to say exactly how long it lasts. I know I was still tired on Saturday, but I also had to clean up a lot before my nurse came, so I kind of started the day with a spoon deficit. After my nurse left, I mostly watched TV, which I haven’t done in a long time, especially live TV. Dan wasn’t watching anything particularly interesting, but the couch was closer than our bedroom, so that’s where I stayed. I used all my energy to check the mail and feed the feral cats, while Dan walked Rosie. That sounds a little more pathetic than it actually is, lol. Our mailbox is down the street, and it’s a steep walk back. I still remember the first time after we moved here when I made the walk back without stopping or even slowing down; that was a big deal for how weak I am.
Sunday, I think I still lounged around a lot, but it wasn’t as impossible to move. Monday, I felt more normal, so I got a couple of things done. I’m working on setting up the house little by little (we’ve only lived here 2 years!) and I’m starting with the bedroom because that’s what I see the most. I just bought a duvet cover with an old gift card, and the comforter I ordered from Amazon came that day, so I put that together. Then I covered a cardboard box with contact paper to make it more decorative (and have never doubted my crafting ability more; why do people love contact paper???). It’s just a small box on the bottom of my nightstand for storing my Xyrem boxes, but I’ve been meaning to do it for months (I’ve had the box and roll of contact paper on the piano bench next to my bed, staring me in the face, for that long), and one little detail is still a step closer to a finished room!
Today, I think I’m OK. (Just in time for more Flagyl, of course!) I woke up at 8:30, and I was afraid the decent level of energy wouldn’t last, so I didn’t do my first Flagyl infusion until noon. I normally do my first infusion earlier, so it’s out of the way, but I was doing it like that so I wouldn’t be slowed down or hindered by having to carry an IV pole around while I tackled my to-do list. There’s no point in getting that over with if you still can’t do anything afterward. I think I’m safe for today, though. I noticed when I did Flagyl the first time that I was only worn out when I did two doses a day, but unfortunately, that’s what it was supposed to be. I only did one the very first day because it upset my stomach, and maybe another time because I was too sleepy to stay up for the second dose. I had hoped that pattern would continue enough that I’d get one more decent day today and not feel like there’s lead in my veins until tomorrow, but I couldn’t remember what happened last week, so I held off on my infusion for a bit just in case.
This blog should make it easier to track stuff like that, so I can better plan when to schedule more active tasks, and when I should catch up on TV (assuming my brain isn’t sluggish too). Now I know I can be productive on Wednesdays, although I’m not sure how much I’ll get done on this one. Writing this took a lot out of me, and I still have to get dressed and walk Rosie. But I haven’t written something like this in so long that this is still enough of an accomplishment for one day. Anything I get done after this is a bonus. I used to be able to bang out entries like this in one go, and then it got to a point where it took me days and days, with a lot of staring at a blank screen and rereading and rewriting the opening sentence. This took me…maybe 4 hours in total, so not my best work, but still a huge improvement! And it was flowing pretty easily for a while.
Now I’m losing my stamina and not fully processing the words (so sorry if I’m rambling), but I also need to eat. And probably need to be better about taking breaks, since I’m still not used to doing so much at once. I’m just always afraid I’m going to lose my momentum if I stop. I never know when my brain will decide to shut off, or when I won’t be able to get back up again after sitting down to rest, so I try to make the most of the opportunities that arise. I may post in spurts for that reason, and I apologize for that too, but I’m sure my sick friends know how unpredictable this can be, and that you can’t always space things neatly.