Another LLMD visit: Starting Rifampin for bartonellosis

I don’t know a lot about Rifampin.

When I started Doxycycline in 2009, I had to learn a lot on my own because I didn’t have an LLMD and only had a month’s worth of antibiotics until I could get to one. God Bless the infectious disease doctor who let me try it even though he wasn’t sure if it’d help. And now I probably know more about Doxycycline than the local pharmacist. I know how it works, what it works against, what it doesn’t work against, what it interacts with, the strength needed for various types of infections, the form needed for various types of infections, the recommended duration of treatment, the half-life, its half-life based upon different dosages, what medications will be less-effective when on Doxy… I mean, seriously. But I don’t know near as much about Rifampin! I’ll have to study, to better understand it, since I take so many other supplements and medications.

But yeah, my LLMD and I had a nice chat yesterday, and thus I was prescribed Rifampin and took my first dose today when I woke up! I am thrilled to find out that this one doesn’t require me to eat or cause extreme nausea. That was always such a struggle for me with the Doxycycline, me not having much of an appetite and I’ve never been able to eat in the mornings.

He asked if I wanted to go back on the Doxy since it’s helped me the most, which was a big NOOOO. I told him about being scared of starting the Doxy again, even though I have five bottles of it, after ending up in the hospital twice in relation to either starting or having to stop it. He said my bacterial load must be very high for me to react so strongly. (Well, yes…) So he asked which infection I felt was most important to go after, which of course would be the bartonella. The suggestions were then Rifampin or.. was it Bactrim? or Ofloxacin?.. and not really knowing much about either, I just left it up to him. (Aha, do doctors always ask you which medicine you want or is that just a me-thing?) So Rifampin it was! He said Levaquin was probably the most effective for bartonella but he didn’t want to put me through the risk of the tendonitis, unless these others don’t work.

He said Rifampin will work against bartonella and also the cyst form of Lyme… Well. I don’t know how I feel about that. I know I have (had?) the cyst form of Lyme after what the grapefruit seed extract did to me, and it would be good to break the cysts so that when I get ready to start treating the spirochete form of Lyme in a few months, everything will be ready for killing (i.e., the Lyme bacteria won’t be hiding in the cysts). I just hope the fact that Rifampin is attacking both the Bart and Lyme doesn’t create a severe herx, since that’s primarily what I wanted to avoid.

Rifampin (pronounced rife-AM-pen, btw) also reaches the central nervous system, like Doxycycline, and according to one chart it’s actually better at it. For this reason it’s very good for the neurological manifestations of bartonella (of which I have nearly all). However, unlike Doxycycline, which is bacterioSTATIC and stops bacteria from reproducing (ultimately resulting in less and less bacteria), Rifampin is bacteriCIDAL, which means it outright kills them. So I may have to expect a different type of herx, with those two things in mind. We’ll continue to check my liver function, but that’s nothing new. Oh, but it turns my urine orange! Ahaha…

We’re trying the Rifampin out for a month to see how I react, and then talk about adding the Doxycycline to the regimen if all goes well (which I would love, if it’s at all possible), since Rifampin cannot be taken by itself at the risk of creating antibiotic-resistant bacteria. As for monitoring the candida, I have fluconazole to use three days out of every ten days, IF using my natural supplements doesn’t work. We want to save the Sporanox in case I have problems in the future, since I respond to it. Even though fluconazole works the best for me, there can’t be any “saving the fluconazole for later,” because I can’t take it more than three days at a time anyway–so that works out, I guess!–but have it, just in case I need it. We’re both hoping Nystatin, grapefruit seed extract, oregano oil, caprylic acid, and Candex will be enough to keep it in check. I am to rotate them every three days. (Olive leaf extract helps guard against that, too, but since I’ve been on it for six years straight, it might not be effective for that anymore.)

I told him what happened with me taking the probiotics and then ending up in ER for an extreme reaction. He agreed that it was most likely too much for me since I no longer had a severe yeast problem. He said VSL #3 is the most powerful type of probiotic available…which is great, and what I needed for a full year. He wanted me on them so it’s not as if I took them without medical supervision… But the moral of the story is, even if you’ve been taking something for a year, don’t let sheer habit cause you to take something after you no longer need it! Bad. things. happen. (Their website says “risk of infection from consumption of lactobacilli is negligible,” but like that really means anything for me, eh?) So he said to start out really small and build up as necessary to avoid that happening again. He also doesn’t want me on the s. boullardi unless necessary, because of that reaction. I feel great about that directon because I was concerned he wouldn’t know how to address it… I have a great doctor.

So right, I took my first dose this morning. Within thirty minutes I was very shaky, weak, and dizzy. Sitting up is not really preferrable, but I had been able to walk a little this morning (maybe 40 feet at a time?); within an hour that, too, was no longer possible. That’s all right, though, because wheelchair and all. As of now I am still dizzy, very weak (my legs are immeasurably more weak than my arms, for whatever reason!), having minor chest pain, and having problems with my POTS-symptoms. For the past two days I’ve had minor trouble breathing… Or at least, minor in comparison. I’ll report back if it gets worse. I’ll add probiotics tomorrow, and begin olive leaf extract again tonight. (I’ve been off of it for the past two days though I’m not sure why that happened… I wonder if that has any connection to my breathing? We’ll see!)

I recently read a new study that said CFS patients are deficient in L-carnitine. Didn’t we already know that? There’s a reason I take so much of it, you know.

a rainbow at night

I have wonderful news to report!

Today I got the results of my yeast culture, and it shows that there is indeed no more candida overgrowth! First, a moment of joy: YAAAY!!!

This means that I can restart my antibiotic therapy, finally. I have an appointment with my LLMD next Wednesday.

We initially were getting the yeast culture to prove that it was still there, not that it was gone. Because after the Sporanox I still had remnants and still required Nystatin for its maintenance, which was unbelievable. But as I stated in this entry, after being on high-dose Vitamin C for a week (and probably the fact that Sporanox continues working for a few days after you stop it; I should think that had something to do with it, too), by the time I got to the doctor to get the culture, there wasn’t anything left to culture! So instead of waiting for the results to prove it was there, I’ve been waiting on them to prove that it wasn’t. And it wasn’t! So this confirms that I can resume antibiotics without worrying about a candida problem!

I’m sure this will be very confusing to the doctors who were waiting for this to confirm the presence of yeast that I’ve complained about for the past year. It was admittedly a very awkward time to have improvement, and I’m a little peeved that I didn’t get the culture done earlier to prove to them that I wasn’t just making it up, or whatnot. (Having misunderstood illnesses such as these means you get accused of that more often than one should.) But I figure if they want to know the full story about why it ultimately came back negative for candida growth (if I have to see any of them again, that is), I’ll just have to explain what happened. Then I imagine they’d be happy for me, too, once they know. But I bet my primary physician is going “What the heck?” at the results! Because on the day I took the test, I was too ill to be bothered with speaking, which meant no energy to explain how the Vitamin C was helping so much… So she’s sort-of in the dark about all of this. Ah, well. I’ll see her soon enough!

a rainbow at night

Christmas, symptoms, and recovery

So much is expected of Christmas posts when you have a publicized “problem.” Everyone is curious about how you coped, or how things were altered because of it. As an advocate for the very misunderstood illnesses I live with, perhaps some might expect me to explain all that I wasn’t able to do–to drive home the message of just how bad these illnesses are–like many others write about. Maybe it could raise awareness to the fact that very little is being done to stop it from happening to your children, or your best friend, or even you? Like a TV commercial for the ASPCA about all the animals that are freezing to death while yours are inside, warm, I see a lot of these types of things related to M.E. and Lyme disease around this time of year. Such as “humorous” Christmas song rewrites, changing the words to suit the various symptoms of the disease. (While everyone else if off doing those things, I’m doing this…)

I can’t think badly of anyone using this time of year for these purposes. I know why people make those posts, and I know the reason why some find a strange sort of comfort in them… But I don’t.

Perhaps I owe it to realizing how bad things could be given my situation, and thus appreciating how they aren’t. Perhaps I owe it to being reminded daily of how special the little things are, or that I consciously think about the beautiful little things even when things are going better than usual. Or maybe I’m just naive and give the able-bodied too much credit for understanding that these diseases do alter every single aspect of how we celebrate any special event, without me having to bring attention to that fact over and over again… Do people realize? Maybe I give others too much credit for knowing that.

Sorry if I’m not fulfilling my “sick person” duty, but my Christmas was wonderful. I feel like I was given a sort of early Christmas gift, even. First off, I was home and not in the hospital (and, um, alive), and I’m making slow but steady improvement. But also, my candidiasis problem is gone… Like, completely. So I could eat whatever I wanted, enjoy the holiday cookies, et cetera. No more food restrictions. No more feeling like the next thing I eat could upset whatever delicate balance my body was striving–and consistently failing–to attain.

Now, granted, I’ll still be eating like a diabetic because it’s just healthier no matter how you look at it, but it’s nice knowing I can eat a normal cookie every now and then and it won’t cause long-lasting harm. ♥ Now I simply continue maintainence therapy, consisting of alternating Nystatin and Candex every week, to keep things staying normal. Next month I should be able to resume antibiotics, after the candida culture results come back.

I’ve also made friends with my wheelchair, now. It was difficult for my family and I to witness “the first wheelchair trip,” but after the whole hospital thing, instead of it being a symbol of how bad things had gotten, it was a great thing to be wheeling me out of my room! An “Oh look, she’s good enough for a wheelchair ride to the kitchen!” sort of thing. So now we’ve pretty much become accustomed to it, taking me to the living room for tea or whatnot. My niece thinks it’s hilarious the way I move my feet “like a mouse” when scooting myself across the kitchen…

I’m still battling my stubbornness, though. Sometimes I get stuck in the kitchen or the living room because I misjudged my ability levels, which somehow makes me feel like I’ve failed, because they’re just.. what, twelve meters away? I don’t want to think I need help walking forty feet, and it’s so much easier to walk there than to maneuver the wheelchair about, or ask someone to take me there… Especially when I could have done it half-an-hour ago, but suddenly I can’t? How does one keep up with this perpetual flux? But I’ll learn. I’m bound to get stuck many more times, but I’ll learn. And hopefully I’ll do it before I harm myself, because nothing would make me feel more dumb than being sick actually because of something I did (or didn’t do).

As of yesterday I feel I’ve recovered enough from the hospital ordeal, so I started my daily herb and supplement regimen. Which would be:

  • Olive leaf extract, 500 mg twice a day
  • Vitamin C, 1 gram twice a day
  • Aloe vera gel, twice a day
  • Ubiquinol (active form of Co Q-10), 100 mg daily
  • L-carnitine fumurate, 1,000 mg daily
  • Vitamin D3 (I’m not deficient yet, but I get no sunlight), daily
  • Calcium, magnesium, and zinc combination supplement, daily

I started the ubiquinol (instead of ubiquinone, for now) and L-carnitine on Christmas because of all the activity. Needless to say, it’s been very helpful, though of course it doesn’t mean the crash still won’t happen. Anything else I take depends upon the day, such as the Candex, Nystatin, or grapefruit seed extract. I’m going to add the houttuynia back later, but I wanted to trial run everything else before I start attacking the bartonella again. Speaking of: My bart symptoms are still–perhaps even increasingly so–very mild… I’m wondering if I should be happy they’re lessening, or scared that they may jump out at me again when I treat the Lyme disease. It’s anyone’s guess, but my family and friends do appreciate me not yelling at them quite so much in bartonella-induced rages! Anyway…

As for how I’ve been feeling since my last update (besides the obviously expected things): For several days after “the hospital incident,” I was extremely dizzy, to a ridiculous level. It’s an unnerving dizziness that feels like it’s coming from inside your head? It’s difficult to describe. I was also horribly fatigued, but both of those things have left after ibuprofen and a lot of sleep + rest. I wore earplugs almost constantly up until yesterday. (Which made it a little easier to listen to music, actually… Yes, with the earplugs still in.) I’m not sure if my extreme sensitivity to light and sound was due to the M.E. or other infections; an overactive nervous system was one of the things that became more frequent before I started treatment.

On December 23rd I was a little Lyme-y, my upper spine was hurting and my arms would randomly go numb and weak… Mild fever… Also VERY thirsty… But that was basically it! Later that night we actually took a short car ride out to see the Christmas lights!

Christmas night I started having arrhythmia and accompanying dizzy spells… Which was startling because, it was the same type of dizzy spell that has been happening off and on the past few weeks. Now I’m wondering if this “dizzy feeling inside my head” could actually be coming from my heart? I have no idea, but whatever the cause, palpitations + dizzy spells last night basically meant, I’d had too much exertion, and needed to stop what I was doing, and rest. Immediately. So, I did.

It should go without saying that now, after the (albeit mild) Christmas activity, I’m having increased muscule fatigability and weakness due to the crash. My legs are not wanting to work with me, my arms give out very rapidly, and.. today I had the first non-bath since before I initiatially starting taking antibiotics, when I was too ill to properly bathe and had to rely on.. I guess you call them sponge baths? When I was in the ER they sent us home with some microwavable bath cloths, so it wasn’t entirely unpleasant, actually! The shock factor has worn off, since it’s not the first time that “it’s come to this.” I can sit up, so my mother washed my hair in the kitchen sink, with the faucet sprayer! Our inside dogs looked onward, very concerned as to why their owner was suddenly taking over their bathtub.

But yes, I can be upright, so I’m happy to say at least my POTS-related symptoms are improved. I’m just waiting on my muscles to recover, and be able to tolerate more sensory input. Tomorrow we are planning an outing, and given the state of my crash I’m not entirely convinced it’s a smart idea, but we’ll see how I feel tomorrow. I may not be able to use my arms for much, and my legs are not happy, but I can be upright, and I can wear earplugs as I always do when I’m “out.” I think I could do it… Oh, and since being back on my herbs, the dystonia symptoms are returning in the evenings. I didn’t expect it to happen so soon!

And finally, all of the tests I had run from my endocrinologist, were normal. All.. what, eleven of them?.. including the ACTH stimulation test, so I do not have adrenal insufficiency. I’m.. glad, in a way, because like I said, had I that disorder I would not have been able to treat it without risking an imminent decline. But I’m also not glad, because it just means that, yet again, there’s nothing else was wrong, and nothing else was contributing to my body’s dysfunction except what I already have… Which is scary. The doctor has mailed me copies of all the results and I’m waiting for them.

a rainbow at night

I’m still alive… No, really. (A Run-In with Probiotic-Induced Sepsis?)

So a rainbow at night has officially ended up in the Emergency Room three times within the past 12 months. Almost five if you count last month being an extremely close call, and the fact that I very nearly had to go back after this third time.

Let me just say, this is not at all what I invisioned for myself a year ago… Then again, sometimes I don’t think I realize just how bad off (physically) I really am, and how that sets me up for these things.

I have no idea how I could have contracted the stomach bug that’s torn through my family members one by one. We are so, so careful to avoid getting me sick because of what happens. My family knows that the moment I catch anything, it’s straight to the hospital. I’m also unsure if the horrendous headache I got the night before “it” happened, was a sign, or just one of my usual anamolies. All I know is, I woke up on Saturday feeling as if were going to pass out, but since I do that sometimes regardless, I didn’t think anything of it. While you sleep, your bowels are at rest, and when you wake up, they begin to move again: Your digestive tract requires a lot of blood to function and digest, so me feeling lightheaded due to the redirected bloodflow to my colon wasn’t too unusual. But in addition to feeling lightheaded, I was also extremely dizzy.

Immediately after rising, I started making repeated trips to the restroom. At first I thought it was just because of the brown rice I ate the day before, because, well, whole grains do tend to get your digestive tract moving, you know. But after the sixth trip, I sensed things were taking a very bad turn. The dizziness got worse, the nausea started, and nothing was working to ease either ailment. My fever went from 98.6°F to 100.6°F within the span of an hour, and I found myself writing down my medical history on a piece of paper while I still had the ability to either write or be coherent: The inevitable was about to occur. Literally within a span of two hours, I had massively dehydrated, developed a fever of 102°F, a heart rate of 160+, vomited up absolutely everything in my stomach, went to the restroom eight times, become mildly delirious, and my family was calling the ambulance.

This was without a doubt the most severe emergency I’ve had to date. First off, my fever hasn’t gone above 100.5°F in over eight years, no matter what the circumstance or infection; I think it topped off at 102.1°F, which is unbelievable and the equivalent of 103-104°F for someone else. But perhaps the most shocking part was that they had to give me three bags of saline for the dehydration, I only had to urinate once, and it was barely enough to use for their required urine sample. To clarify for anyone not familiar with saline drips/IV fluids: Usually you’ll get one, maybe two bags, and then have to pee every 10 minutes. I was given three liters of fluid and only expelled about an ounce of it. Needless to say the ER staff was beyond baffled. My heart rate topped at 180 bpm lying down, and over 200 when trying to sit up. I was given a constant 2L supply of oxygen, because for some “strange” reason it helped my dizziness, even though my O2 levels were supposedly adequate; not sure what to say about that one…

The other major unnerving thing was my blood pressure actually dropped after the IV infusions, which is.. the complete opposite of what’s supposed to happen. My normal blood pressure is 120/70. However, after six hours of infusing liquids and other drugs into me to stop the fluid loss, my blood pressure dropped to a record 79/45. Their rationale for letting me leave was literally that I was still conscious. Need I repeat that your blood pressure is NOT supposed to do that after three liters of fluid?!

They offered to keep me, but I just wanted to get out of there. By midnight I was finally back home, and having ceased vomiting and everything else, I thought I was safe… We’ll get to the horror that was my bloodwork later.

After much sleep, and.. ugh, an absolutely terrible night of convulsing for hours on end, Sunday brought with it a partial recovery, and my fever finally broke that afternoon. Until that night, when I had a “relapse” of whatever had happened the first time. Once again I was making repeated trips to the bathroom, spiking a fever, and vomiting, until by 7am Monday morning I was overcome by a familiar feeling of dread. My insurance wouldn’t pay for the medicine I needed to stop the vomitting and diarrhea and keep me from dehydrating, until they had an authorization form which could only be obtained Monday thru Friday, and only from my primary doctor. After all the back-and-forth calls and realizing we had no other option, we called the pharmacist with the ER doctor’s prescription to just ask for the pills and pay out-of-pocket: Either I had them, or I was certainly going back to the hospital for dehydration. Soon I had a couple of pills to tithe me over and stop me from losing more fluids, but it wasn’t until much later I’d realize that whole fiasco of trying to obtain the medication was stalling me, with life-saving results. 

By the end of Monday night I was finally on my way to a real recovery, and I even got a Migraine late that night and felt almost normal because of it: To think, after all of that, a Migraine! Something so commonplace…

Today has been.. difficult. I’ve been on oxygen all day, and am just very.. uncomfortable, and very dizzy. But no where near as uncomfortable as this weekend, of course! Four days since, and I think being on oxygen all day is actually the best case scenario.

One year ago this week, my immune system crumbled and I developed a very “determined” candida overgrowth. I’ve been fighting it ever since. Well, after eight months on various antifungals, a month on Sporanox, and those couple of weeks on Vitamin C, followed by practically everything in my colon being evicted… My tongue has never been more healthy and pink. I honestly think the candidiasis may be completely gone. But as for my bloodwork…

Every time I’ve been hospitalized (or near-hospitalized) during this long fight, it’s been during my Lyme-flare week. So it would make sense that my neutrophils were high (fighting bacterial infections) and my lymphocytes dropped (making room for more neutrophils to fight the bacteria). Yes, every time, has been during a bartonella flare concurrent with my Lyme flare week plus some other unidentified combination of pathogens roaming around giving me random symptoms. That’d be enough to send anyone to the emergency room! Well, every time except this time.

Because everyone is different, I might should mention that my usual lymphocyte count is around 2 k/cmm. Anything from 1.2 – 3.4 is considered normal, but during this hospital visit, my lymphocyte count was 0.3 k/cmm. And my neutrophils, which again fight bacteria, were double what they should have been, higher even than when I’m Lyme-ing.

I’ve never had anything like this happen before. Something that startled me to realize was that I took a probiotic capsule on Sunday night when I was in recovery (out of habit because I’ve been doing so for the past eight months, until about two weeks ago)…and then two hours later is when all my symptoms began to return, albeit at a less-advanced rate. And what did I do on Friday night before I went to bed? Take those probiotics…

Complications from taking probiotics are very rare, and only happen to the immunocompromised and/or severely ill. But I got to thinking, that was really exceptional timing for me to begin feeling ill all over again, just two hours after taking another probiotic capsule. And I really did do everything right to avoid getting that stomach bug that was going around…


What if it WASN’T a stomach bug that caused my sickness? What if, because my candidiasis has improved so much after taking the Vitamin C, that taking my normal highdose probiotics–that up until now I’ve needed–actually overpopulated my normalizing colon, and invoked an immune response to the probiotics? It was actually just a few weeks ago someone posted on LymeNet about the potential danger of probiotics…that danger being, the very rare but real complication of lactobacillus septicaemia: Probiotic-induced sepsis.

And now in my head I have floating around all these facts that are just too coincidental. My bloodwork clearly shows bacteria being the initiator of my problem; my symptoms weren’t like the rest of my family; I took probiotics the night before this happened the first time; I took them again the night before it happened the second time; my candidiasis was almost cured therefore not requiring the same dosage of probiotics I used to take; I have primary immunodeficiency disease and am a prime candidate for something like this to happen…

To stop and think about this is just.. beyond me. This was one of those experiences where the medical professionals speak in hushed tones outside your door instead of in your room, and this may have been why: I had every single symptom of Systemic Inflammatory Response Syndrome (SIRS), a condition related to sepsis that has nearly all the same symptoms. However, unlike true sepsis, the symptoms of SIRS are related to the body’s immune response to the assumed intruder, rather than the result of the bacterial infection in the blood (sepsis) itself. I don’t have the medical degree to know whether I had this or true sepsis, and unfortunately it’s too late to obtain a proper diagnosis by giving the ER doctors this major piece of the puzzle. I’d bargain for SIRS due to the fact that eliminating the cause–the probiotics–calmed down my symptoms, but who knows. They’re very similar and either condition can lead to shock. Specifically, in combination with my elevated neutrophils, the hypotension + retaining urine after three liters of fluid is a sign of approaching septic shock. And that’s.. really.. I.. I don’t even know. I don’t even know how to process that in my brain, yet. These things lead to organ failure, and septic shock in particular has only a 50% survival rate…

Criteria for SIRS were established in 1992 as part of the American College of Chest Physicians/Society of Critical Care Medicine Consensus Conference. The conference concluded that the manifestations of SIRS include, but are not limited to:

  • Body temperature less than 36°C or greater than 38°C
  • Heart rate greater than 90 beats per minute
  • Tachypnea (high respiratory rate), with greater than 24 breaths per minute; or, an arterial partial pressure of carbon dioxide less than 4.3 kPa (32 mmHg)
  • White blood cell count less than 4000 cells/mm³ (4 x 109 cells/L) or greater than 12,000 cells/mm³ (12 x 109 cells/L); or the presence of greater than 10% immature neutrophils (band forms)

SIRS can be diagnosed when two or more of these criteria are present.

Fever and leukocytosis are features of the acute-phase reaction, while tachycardia is often the initial sign of hemodynamic compromise. Tachypnea may be related to the increased metabolic stress due to infection and inflammation, but may also be an ominous sign of inadequate perfusion resulting in the onset of anaerobic cellular metabolism.

The moment I woke up on Saturday and my bowels began to move, my body immediately began its attempt to rid itself of the probiotics from the night before. And it kept going until it couldn’t anymore. It mostly succeeded before I got to the hospital. And once I took the second probiotic pill the following night, it began again. I didn’t realize it at the time, but it was because I had no medicine at first–no authorization to get the medicine because it was a weekend–that was, in a manner of speaking, saving me. The symptoms I was so desperate to stop with medication were the same symptoms getting rid of the offending cause of the SIRS (?), and if I’d actually had the medicine to stop my body from doing that… I… I don’t know what would have happened. My body would basically have been stuck with a bomb inside of it, and no way to get it out.

And it’s for situations such as these that I believe, even if things don’t go the way you want them to–like me not understanding why I wasn’t immediately getting that medicine to relieve the terrible suffering I was feeling–it’s always for your own benefit; even if you don’t see it at the time, you will. I did get my medicine, but only after enough of the lactobacillus bacteria in my colon had been eliminated.

I doubt I’ll even be able to wrap my head around this until tomorrow, or later. Just, how things played out, with the information I knew beforehand, the timing of the events, and thus being able to figure this out before I took another probiotic capsule and God only knows what would have happened… I don’t know. What this means for the future, will I ever be able to take probiotics again, I have no idea. What I do know, is that I am one blessed soul, who’s obviously still meant to be here. And it seems my nine month battle with candidiasis is finally over. That’s enough for right now.

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. Wow! 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 cruising around 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 $2,000 (making my part about $400), and would signify the need for something more.. permanent, than a transport 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 my medical team cannot find a way to stabilize 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, that 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–wonderful for the small size of my house–and I can propel it about with my legs as long as I don’t go too far. (Trust me, the irony of this is not lost on me.)

So I came home and purchased it.

Remember that random bump on my lip? The one for which I took around 1200% Vitamin C? The candidiasis has improved since I decided to continue it. 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 (seemingly two weeks for me lately?), but bartonella replicates every five days, so it’s actually the bartonella that has me worsening so quickly. (I don’t know if replicate is the right word to use, but that’s when it floods your bloodstream and travels about.) 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. These coinfections are the real trouble, if you ask me.

Hmm… Another 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, so that’s typical. 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 mother cook potatoes seemed like forty minutes, when it was only ten. The one-hour drive to one of my doctors 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 can really say about it. (In hindsight, this was probably related to the migraine pre/postdrome).

The worst moment of this three-day venture from Wednesday to Friday (so many doctors!), happened on Thursday evening. The 24-hour delayed symptom flare from Wednesday evening was beginning, made all the 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, enduring shallow breathing and inadequate blood flow, she 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 M.E. 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 help. What struck me was when she 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 that’s what he had to do for her every night “close to the end” due to her inadequate blood flow. I laughed nervously to hide my discomfort.

a rainbow at night