Happy 2011 everyone! (My current status.)

First post of the new year! And my Lyme disease would like everyone to know it enjoys celebrations just as much as the next organism. The first Lyme flare of 2011 began yesterday. Or maybe it was the 1st, I forget. But it happens every two weeks. The next “Lyme week” should arrive around the 16th~20th. And the bartonella flare following that one, will be a very bad day. Of course I do have random Lyme-symptom days, and it doesn’t always happen that consistently, but in general my symptoms are the worst during its replications. All of these things I’ve come to expect so that when I wake up unable to walk, or massively dehydrated, or with a severe headache (such as today), I won’t be surprised.

I’m unsure why the bartonella flare following the 1st~3rd flare isn’t as bad as the one following the 16th~20th flare? Maybe because the 16th~20th flare was my original Lyme week, and then this other one sort-of branched off on its own about six months ago… Ha! Maybe when I was taking my grapefruit seed exact (GSE), which causes the cyst form of Lyme to convert back to its spirochete form, those Lyme bugs woke up and now I have two sets! *laugh* That’s.. really not funny, but… In my other journal I started GSE on August 2nd-3rd of 2010; at the end of that month, I reported that my Lyme flares had started happening every two weeks. So it actually seems plausible, but what I didn’t mention was for how long they had been occuring every two weeks. Who knows, but it would sure be interesting!

Last night I had much trouble getting to sleep because of the beginnings of one of these occipital-related headaches. The ones that mimick my old occipital neuralgia headaches, but aren’t quite that severe. This morning I woke up and it was full-force. I haven’t had one since November, though, so that’s great! I was getting terrible headaches every couple of weeks, but I had a short respite for whatever reason. However I do need to mention that I’ve had a migraine every week (sometimes two per week) for.. well, actually the entire time between that last occipital headache and this one. (This isn’t a migraine, though, I am sure.) So once again, Lortab/Vicodin, ibuprofen, and I’m as good as ever as long as the meds don’t wear off before the headache goes away.

I’m pleased to report I’m finally recovering from my weakness! I think I may have talked more about that in my other journal, but the M.E. has been raging since the hospital incident, and then there was Christmas, and then there was me making mistakes after being “under the influence” of caffeine while treating a migraine… So it’s been a hard time, but I’m finally doing better! I washed my hair tonight, trimmed my bands, and I’m typing! =) Also, since starting the houttuynia on.. December 30th?.. the bartonella has been woken up. At least I know it’s working (the herb), but of course this means whatever I said about my bart symptoms being minor is now irrelevant.

My mental functioning has been pretty bad for the past two days, and I was about to say “I’m unsure why,” but… Right, Lyme flare! Haha. I didn’t take any of my herbs today, but that’s okay, I can resume them tomorrow. I’m not on anything to kill the Lyme disease anyway, so I’m not sure it matters. My goal right now is to focus on the bartonella. Tomorrow I will call my LLMD and let him know the candida overgrowth has been conquered so we can figure out a new plan of action. My only concern is that I be able to STAY on the Rifampin that I’ll most likely get put on (a bartonella-specific antibiotic), because unlike Doxycycline, you only get a few chances to stop and start Rifampin before the bartonella develops a resistance to it. Research has shown that you can stop and start Doxycyline up to sixteen times, and the bart still cannot become resistant (which has been to my great advantage the past year and a half). So if I get another yeast problem (of any sort, candida or otherwise) and have to stop it, it will be very inconvenient for me!

Hmm… I have not needed my oxygen or had any trouble breathing since.. well, aside from the hospital incident, my blog tags say November! So that’s another good thing! And since I’ve pretty much covered everything, I think I’ll end on that good note. =)

To any and all of my readers, I hope this blog can somehow help you to feel less alone, whether it be in your struggles, or your thoughts.
a rainbow at night

Hello again, internet!

Backdated entry. Originally published in my personal journal, but also posting it here for its health-related significance.

So… When I had that migraine on Wednesday night, I was under the effects of caffeine (which I use to abort them) as I typed that entry on my health blog, and another entry on my personal blog. But I shouldn’t have done that, not only because I was caffeinated and thus unable to pay attention to my body’s signals, but.. I still had to recover from Tuesday’s outing! Can we say brain fail? =( So…

The past two days have been ridiculous as far as muscle weakness goes.  I’ve been listening to lots of old CDs and watching DVDs, as to not use my arms too much with texting or typing.

Thursday was.. fun. Real fun. If raging M.E. accompanied by a bartonella flare (because I started the Houttuynia herb) followed by another migraine is your idea of a grand time. Dystonia, rapid alternations between crying and rage, fever, muscle twitches everywhere, shin pain (which is a common bart symptom that I’ve only developed in the past few months)… So whatever I said about my bartonella symptoms lying low, is now null. Starting the houttuynia has woken everything up again, which is.. actually a good thing, because it means it actually is effective at helping to kill it. That doesn’t mean I like going through this, though. Oh, and chest pressure! The feeling like someone is literally pressing on my chest. Another of my classic bart manifestations. Speaking of heart, I’ve also had more palpitations and accompanying dizziness/inability to breathe, but I’m unsure if that’s bartonella related or just.. something that’s happening? The fact that I get dizzy with them, though, is unnerving, because it has to be a pretty significant arrhythmia for you to actually feel the symptoms.

I’m still in recovery from my attempts at activity, but at least I can type a little, like on Wednesday! Thursday night, as I waited for a mood swing to pass (and my migraine meds to kick in), I did a painting, because I realized watercolor takes very little arm strength:


My inspiration? A paper towel design! Haha.

Randomly, someone e-mailed me about the entry I made concerning Dr. Crippen, offering to send me all of his stuff that they saved to their computer… I don’t know what I’d gain from it, though, but aggravation, so for now I have declined. Then there was another person who  was concered I was defining myself by my illness, so they left me a very heartfelt comment, which was much appreciated, and gave me a chance to write somewhere on here that my health blog is just a health blog and I do still try to have a life that doesn’t revolve around illness. =) So, I assume people really are reading this place?I hope it helps others, somehow…

Okay, I think I’ve rambled enough to make up for the past two days.

a rainbow at night

Dealing with a crash. (And my “About Me” page)

I now have contact information for two physicians that are close to me and knowledgable about Low Dose Naltrexone! I think I shall be starting this drug very soon! So this makes three good things lately:

  1. Able to start my herbs,
  2. Found a new thing that helps me (the Vitamin C), and
  3. Now I have access to one of the few available therapies for M.E. (and also Lyme) that could possibly help. =)

I feel hopeful! Also, and I don’t want to get ahead of myself, but with this past M.E. crash, despite the inevitable bad moments, I feel accomplished that I’ve figured out what to do over the past eight years to decrease my recovery time.

  • Sleep whenever my body says sleep
  • Avoid overstimulation of senses, light/sound/smells, etc.
  • Baclofen so my muscles rest
  • Get a lot of protein
  • Be sure to take Co Q-10/L-carnitine (and other mitochondria-supporting supplements) close to the exertion
  • Don’t overdo further!!!
  • Maintain adequate hydration
  • And now, Vitamin C, for whatever reason it’s helping

All together (and, owing mostly to the Co Q-10, if my past experience is anything to go by), I’ve recovered twice as fast as I would have in the past, without all of this. =) I may not be able to have dramatic improvement, but it’s at least worth something to be able to keep myself from getting worse for once, right?

This is day two on my herbs and for the most part I am.. very, very dizzy. Blurred vision, and very dizzy. As in, stand up (my blood pressure is better for once!) and fall right back over, dizzy. We’ll see what happens next; I’m only on half the doses for a few more days. But again, all things considering, I’m amazed at my ability to even stand up, much less the fact that I actually walked today! I would say, today is a better day, and I am at about 20% physical ability. =) I shall definitely enjoy the respite. ♥ I am almost out of my Co Q-10 though, unfortunately. I will go order that as soon as I publish this.

Also, after.. a long time, I finally finished my “About me” (or About ME, depending on how you want to look at it) page. It’s long, but pretty much sums up the past ten years.

 

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.