It appears that most of the infections from ticks start with the letter “b” – borrelia is Lyme, babesia is a type of protozoa, and bartonella is more commonly known as “cat scratch fever.”
Then erlichia comes in and screws up the whole alliteration, but that’s beside the point.
I had a follow-up with my LLMD yesterday, and apparently it’s come to light that babesia and bartonella are very likely co-infections that I have.
I was diagnosed in the exact same way I was diagnosed with Lyme: I showed symptoms, and the tests commercially available suck ass. There are several strains of each (as in, over 20…which WHAT THE FUCK, because DAMN), but they only test for a few. So while it’s not so much a diagnosis of exclusion, it’s a diagnosis of “huh, there’s not really anything else it could be, is there? those are some weirdly-specific symptoms, yo.”
With Lyme, the problem is the diseases hiding, and that’s also true of both bartonella and babesia, especially if you’ve had them a while, which is suspected in my case…they’re both tick-borne, and I don’t remember being bitten (unless that tick I found on my leg this past year was like HA HA YUM before I found him, but I have no idea, frankly, whether a red spot would be a tick bite or one of my usual skin irritations).
I’ve had air hunger quite often in the past year (once it landed me in the ER…remember that? the meds I was on shouldn’t have had that strong of an effect, and wouldn’t have several years ago…I know because I was on them, before). I was marveling at how one day I could walk around fine, with just some pain, and how another day I could barely get out of bed without being out of breath or without falling over. My fevers, weakness and unsteadiness, migraines without provocation…those are hallmarks of babesia.
Bartonella is a little more…mundane, especially when compared to babesia, and some of the symptoms mimic those of Lyme. Neurological symptoms are definitely more pronounced, however, and with the advancing nerve symptoms and brain symptoms (I’m…derpy is the best word, honestly, but spend more and more time frustrated and unable to do much of anything), it’s a possibility that can’t be ignored.
These are ridiculously common with Lyme disease, whether chronic or acute, and from what I’ve read, the reasons behind delayed diagnosis of the co-infections is because Lyme overshadows everything else, since it’s so damned HUGE in its symptom set. Once you start treating for Lyme, anything that’s not a herx is a symptom of something else, essentially.
The hallmarks of both bartonella and babesia have increased in the past 4 months, in particular. When you rule out the side effects of the medications, and the effects of herx, you get clinical diagnoses of two unfriendly co-infections.
My LLMD was talking through all of this, and Forrest and I looked at each other, and there was a shared look of panic…an “oh, shit…” of this happens all the time. It’s not just me being paranoid – those around me are noticing, and that’s when you’re in the FML Zone of Symptoms, as I have been calling it for all of 5 seconds.
So what do we do about it?
Well, I’m going to be taking levaquin and bactrim starting in a week (I’m taking a week off from all meds to give my body a break before jumping back onto the liver-death train).
I just got a prescription for mepron, as well, but we’d talked about not overwhelming my system, so I’m going to call on Monday and see if that’s necessary, or if I can hang onto it. (Mepron is a liquid suspension that looks like yellow paint. It also stains ALL THE THINGS, and costs $1361 without insurance – my insurance covers 94% of the cost, but it’s still $100, so that was a fun discovery…hopefully this is the only course I’ll need, because I can’t afford it.)
The side effects of mepron are basically worsened babesia symptoms.
The side effects of bactrim are basically the same for other antibiotics.
The side effects of levaquin, however, include schizophrenia. I’m not kidding. I don’t know anyone who’s been on this medication while also having Lyme who hasn’t gone a little insane. Marriages have ended, police have been called, violence has ensued.
Given that Ambien made me slice up my leg back in 2009, we’re taking precautions around here by treating me like an unstable toddler (who happens to be tall): locking up all weapons. The intent may not be there for me to hurt myself or someone else, but look at this side effect: feeling that others can hear your thoughts or control your behavior.
LOOK AT IT AGAIN: feeling that others can … control your behavior.
I’m not messing with that, you guys. If I’m going through all this trouble to treat my diseases, I’d like to survive to see the results. If my brain gets the idea that someone else wants me to hurt myself or Forrest – or even one of the cats – I’m going to make it as difficult as possible to accomplish that task.
Other fun side effects include the following:
- seeing, hearing, or feeling things that are not there
- severe mood or mental changes
- unusual behavior
And, my personal favorite: unsteadiness or awkwardness.
I’ve always wanted an excuse for my awkwardness. Now I have one.
All joking aside, if you guys want to help out, because there WILL be additional expenses incurred during this time period, and I have a feeling additional stress may make this worse (and this is for both me AND Forrest – I’m not just asking because I can’t work, I’m asking because there will be days where Forrest may have to stay home and take care of me, or where I may need to reimburse a friend for helping to take care of me), the donation link over there to the left is still active.
As I said in the title, this isn’t an official bleg. I’m not making this post just to ask for help. I’m making it because information and knowledge are power, and I’m continuing in my quest to let folks know what’s going on with my treatment, because this journey isn’t one I want ANYONE ELSE to have to take. Ever.
So wear bug spray. There, that’s my bleg. WEAR BUG SPRAY, FOR THE LOVE OF GOD. And regularly cut the grass and weeds around your house. Seriously, that shit will save you so much money and heartache it’s not even funny.
I will continue to keep folks updated. It might finally be time for another vlog.