Things are going good.

I haven’t been updating! Let’s fix that.

The 300mg daily dose of Rifampin is MUCH easier on me. I read somewhere (i.e., don’t quote me) that Rifampin strengthens the power of other antibiotics… So maybe that’s why I can handle the 600mg until anything is added to it? Regardless, I’m still herxing (some days the fatigue is fall-out-of-your-wheelchair unbearable!), but I’m not deathly ill or thinking I might need to run to the hospital once-a-week, like before.

Since that last migraine I haven’t had another, or even near another. For a while I thought the Topamax was causing me to wake up 4-5 times per night (though I still dream/reach REM-stage sleep, so this isn’t like Fibromyalgia), so I started taking it in the mornings. It still happened, so I think I’ve ruled that out. I’m still waking up several times a night, though. My experience with Topamax has been:

  • 1st week – Still lots of Migraines
  • 2nd week – Migraine “bursts” and auras
  • 3rd week – No more Migraines

Except when I introduce a trigger, of course. I like this medicine!

Yesterday was pretty bad as far as mental symptoms go, and it started the night before. I was very cynical and just generally.. foul. I kept distracted and didn’t ruin any relationships this time, aha. Last night my mentality became better and it still is as of today.

About two nights ago I woke up having a lot of trouble breathing. It was difficult to initiate swallowing again, I was short of breath, my tongue was numb, and my limbs were tingling and numb. That was about it, and it went on for about two hours… I wasn’t too unnerved, because I stupidly (yes, stupidly) ate a small meal right before I went to bed! Gah! But it was unusual, because for the past several days prior, I hadn’t had any dysautonomia problems. I’ve been splitting up my meals and eating them in small portions as to not divert too much blood flow, and up until then, it had been working.

Then this morning… I’ve woken up with slighly dropping left face, a numb & tingling left hand, and a numb & tingling left foot. I am incredibly dizzy. I’ve been awake an hour and a half and none of it has let up any. I assume I’m digesting something or another, because my right side is also experiencing numbness, but it’s not as constant as my left side. I actually fell over this morning (onto my bed, thank God!) because I couldn’t feel the toes on my left foot! Hopefully this will let up once the digestion stops…

Ah well. Time for the good news! Despite this being a usual Lyme flare period, my symptoms aren’t severe at all! No heat sensations in my left foot, and I haven’t even had the usual heart palpitations that occur! I did have upper spine pain, and a mildly severe headache (haha, and by “mildy severe” I mean a short burst of terrible pain that went away after about twenty minutes), but.. for the most part, things are lessened. (My bartonella flares have been milder, too, which is why yesterday’s snuck up on me. Normal 99.2 temp. I was also coughing a lot yesterday? Not sure if that’s signifcant. My feet started hurting the night the mental stuff began.) The only problem here, is that if I’m not having any arrhythmia, the holter moniter will have nothing to show! Ahaha. Oh, the irony. So I’m ditching my calcium and magnesium for the next five days in case it might help spark something; I’ll start it again before things get risky. I just hate the idea of wearing this thing for two weeks and it NOT showing anything!

Other good things are, I’m out of my wheelchair a lot more! I can usually go get the minor things I need, such as bottles of water or Ensure drinks, except for when.. you know, I can’t. And I still haven’t needed any oxygen supplementation. And after seeing my allergist/immunologist I found, I still have no allergies! Not a one! =) Part of me wonders how on earth I’ve avoided that… But nonetheless, I have, and it’s great. I was very short of breath in her office, and my toes turned blue (soon to be feet, if I hadn’t caught it), but propping them up on the exam table helped that, and my breathing, haha. Also, I’m able to type more now, but of course still experience the delayed muscle relapse. Baby steps!

 

a rainbow at night

Transport chairs, Vitamin C, and herbs.

Let’s see. Significant health-related things that have happened the past few days…

My primary physician said I could have whatever mobility aid I needed, to just go to the medical supply store and pick something out. The only problem was, what would benefit me the most–a transport wheelchair–is NOT covered by my insurance because they’re not a self-propelled item.  (Which doesn’t make much sense to me, really. If I’m too sick to push it myself, you’d think that be a major part of why they WOULD cover it?)  There was some minor debate between my family and I about why I didn’t want an electric wheelchair, which, for clarification, is usually what you see children with muscular dystrophy in, since their disease also means they cannot use their muscles to propel a manual wheelchair. First off, I didn’t want it because it’s too large, too heavy, wouldn’t fit in my car, and would take up a lot of space in my room, but most importantly, it costs $2k (which would make my part about $400) and signifies the need for something more.. permanent, than a wheelchair.

I realize that this is a major step, one that could potentially signify my inability to return to a pre-wheelchair bound state if we cannot find a way to stabalize me. But I don’t think that justifies having my insurance pay for an electric wheelchair or scooter, when there’s still a chance I may not need it for more then the next several months. I’m not hopeless yet, you know? There’s still a chance that we can get this under control, and I can resume antibiotic therapy, and as a result won’t be quite so sick. If I progress further and need an electric wheelchair or scooter, then fine, but let me give this a try, first. In the store, they had the one I was going to buy online set out, so I got to try it out for size and usefulness. It turns on a dime, which is wonderful for the small size of my family’s house (well, I guess “my house” too, now). And I can push it about with my legs–as far as my room/bathroom goes–which will be fine as long as I don’t overdo it. (Which is.. fairly easily to do, recently, but…) So I came home and purchased it.

Remember that random bump on my lip? The one for which I took around 1200% Vitamin C? My yeast problems have improved since I decided to continuing that. I can brush my tongue normally in the morning, without needing the Nystatin. My digestion is more normal, also without taking Nystatin. And things are becoming more normal in the lower regions, as well. I don’t think it’s any coincidence, and high dose Vitamin C is a good regimen for just about everything I have going on… That random bump that caused me to take so much of it, could have been a blessing in disguise. I’m about about 1.5 grams daiy right now, and I do plan to continue it and see what happens.

Normally I’d be really happy about this, and in general I am, but… Again, it helped, so when my doctor had to get a culture sample from me, to confirm the presence of the candida yeasts… Well, now I’m concerned that because things were better, it might not show up! Ha! How’s that for irony. Either way, I can’t resume antibiotics until the results are back, roughly about 6 weeks from now. :( But because I won’t be doing any more tests or things, what I CAN resume, are my herbals! So with much, much glee, I have added back my olive leaf extract, oregano oil (only for five days), and houttuynia! The latter is for the treatment of bartonellosis, so I’m a little nervous about that herxing. I don’t think any of these treat Lyme, but after five days with the oregano oil I can switch to grapefruit seed extract. Lyme replicates roughly every four weeks (or two weeks for me lately), but bartonella replicates every five days, so it’s actually the bartonella that has me worsening so quickly. That’s not including any possible babesiosis, which I pray I don’t have, but it has a replication of 4-6 days as well. The things that hang on to you because of the Lyme (whether you got them from the same tick or not), or because of underlying immune dysfunction, are the real trouble, if you ask me.

Um. I had a migraine on Friday. Just for the record. I’ve also started to get more frequent headaches, mostly in the front of my skull. I went a few weeks without needing pain meds every other day, so I wonder what randomly made them start happening again? But as far as other typical-bart symptoms are concerned, my shins have been hurting for two weeks, and I now experience foot pain every other day. And yesterday when I woke up, my temperature was ALREADY 99 degrees; it later went back down in the doctor’s office, to 98.5 degrees. Today my temperature was a brief 99.5 but I’m not sure of its significance, because I didn’t get my rising temp and this is right before my menses. The dystonia has NOT been severe in a while, but with the addition of my herbs I expect it to flare up a bit: We shall see.

As for me mentally: I. have. no. sense. of. time. But it’s not like my usual timelessness, where things seem unusually fast, or I blank out, or like before, where I forget entire days. Lately it’s been–and I’ve been doing this over and over and over for the past week–that things seem to take a disproportionately long amount of time. Watching my mum cook potatoes seemed like forty minutes, when it was only ten. The one-hour drive to one of my doctors literally felt like it was longer than the five hour drive to my LLMD. And a bunch of other things where my family has had to tell me, “No, you’re just doing ‘that thing’ again.” Everything feels like it takes forever, and I’m not sure why this is. That’s all I really have to say about it.

The worst moment of this three-day venture from Wednesday to Friday (so many doctors!), happened on Thursday evening. Wednesday’s evening’s activity was cumulating in its 24-hour delayed crash, and made worse by Thursday’s twelve-vial-bloodloss. I wandered to my mother’s room and collapsed in her bed, as I am wont to do when I don’t want to be alone because of feeling particularly awful. I haven’t had an episode of my breathing muscles being affected by the weakness in a long time, but it happened that night. Specifics aside, this ultimately resulted in cyanosis of my extremities (please note that I do not have Raynaud’s syndrome). Being mostly unable to move from shallow breathing and inadequate blood flow, mum massaged my hands and feet until I returned to a natural, oxygenated pink. Why I said “no” to her fetching my oxygen machine is beyond me, because I really could have used it: The fact that this sometimes affects the muscles in my chest is one of the reasons I have it! Nonetheless, I continued to make a slow recovery with rest and mum’s help. What struck me was when Mum brought up my sister, whom I talked about last post. She mentioned being glad that my dad wasn’t around to see her rubbing my hands and feet, because it’s what he had to do for her every night “close to the end” because of her blood flow. I laughed nervously.