In case anyone was wondering why I haven’t been around, it’s because I’ve been in the hospital. If you’re on my Facebook or Twitter then you already know this. I went to ER three times in less than 24 hours, so they eventually kept me. I was there from Sunday night (Feb 27th) to Friday (Mar 4th) from these “episodes” that acted like seizures, but weren’t. The antibiotics didn’t technically cause it, i.e. it wasn’t an adverse reaction, but the medicine killing the bacteria definitely woke something up, so everything entered into a sort of revolt and my body–particularly my nervous system–could not cope. I talked to my LLMD from the hospital, and he told me to stop all Rifampin and Doxy for two weeks, only using the Doxy to avoid another emergency room trip. (You cannot stop bartonella treatment “cold turkey” because THAT can land you in the hospital, as it has for me in the past.)
My body has been fighting a lot of things these past two weeks. In addition to what I already had, my labs suggested an unidentified virus lurking, for which I can do nothing right now; I’m anemic because of the infections that I can’t treat; my blood sugar has been high (because of stress reaction I think); and I haven’t been absorbing proper nutrition OR essential vitamins, yet I’ve also been unable to handle my nutritional shakes, so it seems inevitable that I will lose more weight. When everything else went south, my liver decided it couldn’t deal with my antibiotics, either. However my body also cannot cope withOUT the antibiotics either, since bartonella comes back with a fierce vengence in a very small amount of time, so I may very likely end up in the hospital this weekend if things take a wrong turn. All I can do is pulse the Doxy on Saturday and Sunday, and hope for the best. I’ve officially run into a treatment failure, despite us being so careful to avoid it. I’ve been very, very ill and unable to handle ANY of my medicine, even my herbs. Things got.. pretty bad.
You know, I really should be more specific in my prayers. Like, instead of asking to “make it to Saturday” without an ER visit, I probably should have extended that to the whole weekend! Because leave it to me to feel in the clear on Saturday, and then end up in the hospital on Sunday!
I guess it all started Saturday evening/night, February 26th. I watched a lot of TV, including two movies without pause, which doesn’t sound like much, but for someone with M.E., watching four-five hours of straight television and actually paying attention? That’s a lot of energy. Too bad it doesn’t affect me then and there. It was fun, and worth it, but I should have rested after that. I didn’t.
So the next day a lot of bad things came together:
- The relapse from the previous night began hitting me.
- Doxycycline takes 10 days to build up to its highest levels in your nervous system, and it was day ten.
- I had a small argument with my mother which stressed me out further and I am not supposed to get stressed out.
- I overexerted further: I just wanted to lie down in the living room and watch two movies with my family… I didn’t think it’d get me as sick as it did.
So by 7pm Sunday, I was sick as a dog (why do people say that?), herxing severely, having a Migraine, and I guess my nervous system just.. had enough. I had been having severe tremors all day, but then my muscles began spasming and going numb interchangeably. I went to my mother’s room for safety. She looked at me and immediately started making a list of my current medications for the hospital staff. (Mother-premonition?) I then proceeded to have this seizure-like episode of my limbs going numb, my tongue going numb, an inability to swallow (though I could breathe all right), and uncontrollable convulsions. My stomach felt this “rising” sensation and my speech was slurred whenever I did try to talk. This happened three times between Sunday night and Monday evening, so by the third ambulance trip, and me failing the Pronator Drift test (a neuro test, indicating a upper motor neuron lesion) they kept me.
“It” proceeded to happen again that night, twice on Tuesday, and once on Wednesday. I was discharged from the hospital Friday morning (4th) and I had a minor attack that evening. Then another minor attack on Monday, and one on Tuesday (the 8th). They were getting less severe and.. more Migraine-like than seizure-like, but then I had another bad attack two days ago on Wednesday, complete with a few minutes of convulsions. :\ But for the most part, instead of full-on convulsions I get some muscle twitching, and the “main event” is now a tingling sensation in my stomach and chest, abrupt numbness of my arms, neck, face, jaw, tongue, all mostly on the right side, and sudden slurred speech. (I still suspect some nerve around there is really messed up, perhaps that vagus nerve that has been giving me so much trouble recently.)
There are some very odd happenings that make it nearly impossible to find the true cause. I’m not sure there is just one, really. The first time it happened after drinking an Ensure; the second after taking Rifampin; the third after eating a hamburger; the fourth after eating again; the fifth after an Ensure; the sixth-thru-whatever numbers were correlated with either Ensure drinks or Migraines. In fact I’ve had a Migraine on.. Sunday (Feb 27th), Tuesday, Thursday, Tuesday (Mar 8th), and yesterday. Also, during the first three episodes, I really, really had to pee before it happened. Like, an abnormal amount, but I wasn’t drinking that much, so it didn’t make any sense. Nothing makes any sense, besides my nervous system just went into some type of overload/failure. I’m sure the exertion worsened it, as did the antibiotics/herxing, and for a time I developed the same sensitivity to Ensure as I have to daily multivitamins. I cannot take vitamins because they cause this unusual, terrible reaction where I become in a paralytic-like state for about 8 hours. And because of the number of times this happened shortly after drinking an Ensure–even though I’ve been drinking them for weeks and it helped me stop losing weight–it looks like I’m having a similar reaction to the nutrition in them, after a certain point. But why it happened after I ate? I have no idea. And why did I have to pee so badly before them? What the hell?
I’ve had intermittent arm numbness since I started antibiotics, which I’ve mentioned on here repeatedly. (And oddly enough, it was in conjuction or following severe headaches, remember? They didn’t seem like Migraines at the time, but now, I wonder…) So the antibiotics woke something up, I guess. And I also mentioned here, I’ve had increasing trouble swallowing for the past four weeks, which made it impossible to eat a lot of things. It cumulated into a full inability to initiate swallowing last Tuesday, and it was pretty scary for a while. I didn’t want to end up with a feeding tube. :( Other things of possible note are my more frequent arrhythmias and tachycardia, which annoyingly never happened during any of the three times they checked my heart rhythms! But they did run a LOT of tests of me, over twenty-five. Included was an EEG, and the results would insinuate I’m not having seizures, but the sad part is, you can still have seizures and have a normal test result. :\ So. Yeah. They ultimately found:
- I have a rotated kidney! This has been present since birth and poses me no problem.
- I now have moderate mitral regurgitation in my heart.
- A spot on my brain, which made me very, very angry.
Because I’ve had three MRIs in the past two years. Three MRIs. I’ve had this lesion in my brain during the last THREE scans of my brain, and no one said anything about it! It wasn’t on my 2003 MRI, but it’s been there since at least 2009, and has gotten “minimally more prominent.” I got Lyme in 2006, and both Bartonella and Mycoplasma in 2008 (when my neuro symptoms really took off) so my best assumption is, they did it.
But speaking of brains, they had me see a shrink to make sure I wasn’t just causing these problems out of anxiety. And I can’t really blame them–my doctor mainly wanted to make sure anxiety wasn’t worsening my problems–because truly my symptoms were very anxiety-like; if I didn’t know me, I would have made the same assumption. But as you can imagine, the results of that were, “She’s sane,” which is the SECOND time I’ve had to see a psychologist to prove to my doctors I’m not just a stressed out female… So maybe now they’ll leave that alone?! An interesting fact, though: The psychologist knew what Rifampin was because he has two other patients who have been off and on antibiotics for Lyme and coinfections. You know, in this state where I live, where Lyme supposedly doesn’t exist? Just like the two patients my infectious disease doctor treated here? Yeah…
The area of my brain with the lesion is the Pons, which is part of the Brain Stem. All of your brain is important but that.. is.. very important. It’s the part that allows communication between the your brain and spinal cord, i.e., any signal your body gets or receives has to pass through it. Wiki says the Pons is about 2.5cm in length, so the fact that this “spot” I have is 1cm itself… A little frightening, that. It could have been caused by a particularly bad Migraine, but.. then why is it getting any bigger at all? Or if it’s demyelination caused by an infection, it’ll just be there forever. If it’s actually a Lyme cyst, it could disappear with antibiotic treatment, because it’s not nerve damage as much as it is a bundle of bacteria that appears as a lesion on an MRI. The worse case scenario is that these infections have triggered multiple sclerosis (MS), which Lyme, Bartonella, and Mycoplasma pneumoniae are all capable of doing. And truth be told, the spot is more MS-like than Lyme-like. But. That scenario seems less likely, because MS doesn’t improve on antibiotics; I did.
As for the valve regurgitation… Well, I guess I expected as much. MVR generally gets worse over time, so it’s a little scary that it went from mild to moderate in just a year and a half, but… I guess when you look at what’s currently happening, and also with me being unable to treat the bartonella for almost a year (bartonella really likes the heart), it’s not that shocking. As if having M.E. wasn’t enough of a predisposition to heart failure, this does not help.
I’ve been working on this entry since Tuesday, so maybe in another few days (hopefully sooner!) I’ll try to make a post about what’s happening now. Until then, wish me luck with my antibiotic pulse, that it’s enough to keep me from the ER! I’m sure they’re very sick of me by now!
♥ a rainbow at night
[Note, Nov 17, 2011: Further developments as to what happened can be found in subsequent posts, or by clicking the "pings" (posts where I referenced this one) below. These attacks were eventually proven to be neuropathy of my vagus nerve.]