Appointment recaps: Pain management and LLMD

I may have to use the sentence structure of a five-year-old for this. Severe brain fog has kept me from typing my updates. But I may be able to get it done if I just try another way of speaking. I have a few sentences typed up from last week to go on…

Two weeks ago I set two new blog records. I feel special! :) Probably the most amazing thing about this is that my words reach people all over the world. Had you told me as a child, One day you will grow up and share your words, and people everywhere, in dozens of countries, will read them and be helped by them, I would have called you crazy. Technology can be so amazing, when used in a way that is beneficial.

I had my usual beginning-of-the-month flare, but I was able to get through it a lot better because I have adequate pain management… Or suffering-management, I should say. So much coughing, coughing, coughing. But my appointment with the pain management specialist went very well and I have what I need to cope. I no longer have to ration out meds and I think I’ve come to terms with being a chronic pain patient for the time being. As long as I stick to the schedule and not try to see how long I can last without them, I am okay.

I am able to stretch daily again, which is amazing and a big help. With continued exercise I should keep my muscle tone and gain more muscle stamina, which is really important because goodness knows what I face ahead of me.

I had my LLMD appointment but we didn’t have much time to speak because he is busy and overbooked. But I’ll take a twenty-minute appointment in comparison to no appointment. We really didn’t have time to go over much, but I have been given instructions to attempt Amoxicillin; do a round of Diflucan to make sure yeast isn’t a problem; and see a chiropractor in the event that it may help my headaches. I’ll make another appointment in January.

Right now I am taking Diflucan, one pill a day, which I can handle as long as I am properly medicated. And taking my probiotics to rebuild my poor GI tract while I’m off antibiotics. Beginning “next year” I shall attempt treatment again… Everyone is hopeful that,  just like being properly medicated is allowing me to take the Diflucan, that perhaps having adequate pain management will allow me to withstand Lyme disease treatment. I am hopeful, too… Patients undergoing cancer treatment get help with their intense pain and discomfort; why shouldn’t I?

I won’t be treating all forms of Lyme. Ideally I’d be on Amoxil PLUS Biaxin PLUS Flagyl and treat ALL the forms so it would DIE AND STAY DEAD… But if we did that I, too, would die and stay dead, LOL. And Amoxil doesn’t treat Mycoplasma pneumoniae at all. But, if it’s all I can handle…? If I even can…! But who knows, maybe that is what I need right now, to ONLY kill some of the Lyme. Just like in the past when my body couldn’t deal with killing Bartonella and Mycoplasma PLUS Lyme, maybe now my body cannot handle killing Lyme PLUS Myco. Maybe now, I have to get the Lyme count down before I can deal with the Mycoplasma… Who knows!

On the plus side, that paper that explained how well various antibiotics attack Lyme, said “amoxicillin reduced spirochetal forms by ~85% – 90% and [cyst] forms by ~68%”–so that is good!

I’m just trying to go with the flow and enjoy my life in whatever form it is available to me. If you’re reading this, have a blessed holiday season and treasure your loved ones. :)

a rainbow at night

For right now, this needs to stop.

As far as my relapse conundrum, I could not continue treatment, after all. I just.. stopped. I am still so emotionally drained, and my body is at wits’ end. I’ve been off antibiotics for a month, now, and I’m flaring at the moment because of the usual beginning-of-the-month bug-flare that happens… Only this time I am not protected, so it’s scary to think of what they’re doing in there! How can one feel this close to having the flu and not actually have influenza?

On Samhain I ultimately decided to take another two weeks off and just restore my body as much as I can, with only the necessary things and as few medications as possible. I don’t think I have any yeast problems, but I’m going to take a few doses of candidiasis treatment, just in case. And then I’ll talk to my LLMD and see where we can go from here.

I can’t thank you all enough for the responses to my last post. At any given moment, I am ready to reach out for help, or curl into a ball and never speak again. It’s a constant back and forth. I want to say, “the disease is what makes me want to retreat,” but it’s not even that. It’s my response to it. It’s knowing that I do have some control here, I do have a choice, and I’m terrified of making the wrong decision. Continue this grueling treatment regimen and make myself worse, an inevitable decline, or forego treatment completely and still begin an inevitable decline. But I’ll tell you what.

My intuition says to stop.

And I always, always listen to it. It says I need this break. It says I could use it to heal my body as much as I can, and in two weeks I may know clearly again what next step to take. I can’t believe in God as much as I do, and ask Him to guide me, and then not follow what I feel is the right course of action, even though I can’t explain it.

That became even more apparent today when I really wanted to take my antibiotics again, because the thought that these infections are inside me running amuck and I have nothing to stop them, is very frightening. It was then that I noticed how strong my conviction was to not resume my treatment…

Anyone think I’m crazy, yet?

I can’t help but notice that the idea of treatment helping me, which has always been my motivator in the past, has not even crossed my mind. It’s as if somewhere inside I know that to continue with it at this point in time would do me harm. Logically speaking, I think that not treating is also pretty bad, but somehow, not as bad as taking these medications; at least not right now.

So that’s where I’m at.

 

I also had a visit with my new neurologist, and it wasn’t as productive as I thought it’d be. Part of that is my body’s fault because I only got to ask him half of what I wanted–I was so bad-off that morning I almost passed out in their waiting room.

In response to my relapse he said, “There will be good weeks and bad weeks, good months and bad months.” And apparently when you tell someone you have myalgic encephalomyelitis they don’t think twice about you having severe daily headaches and eye pain (i.e., I guess you do have headaches). But he’s a good doctor who at least didn’t outright call me a hypochondriac. I’ve noticed with having this lesion on my brain, people tend not to think you’re “just exaggerating” quite as much. He said it was post-infectious demyelination, but it wasn’t changing in size so he didn’t feel I needed a repeat MRI for right now. My various damaged nerves are healing up, so that’s a good thing! So much so, that he didn’t  think I ever had facial palsy… Luckily that’s in my notes from my last neurologist. :\

He also thinks all my movement disorder problems are Tourette’s… Which is wildly inaccurate, but because he thinks Tourette’s Syndrome is just a “group” of movement disorders rather than its own thing which should be diagnosed after the other movement disorders have been ruled out, it would make sense for him to say that. I can always see that movement disorder specialist should things progress even further, so. (I know it’s not Tourette’s because my TS does act up when I get new infections, however, it acts up completely differently than the problems I’m currently having.)

He said do NOT take any triptans for my migraines (the main reason I went to see him, actually), and gave me Cambia powder to try for my next attack. Which my insurance won’t cover, of course, so I’ll rely on samples like the other three medications I can’t afford. He diagnosed me with complicated migraine and said I really should be on a preventative medication with this type of diagnosis, but I mentioned that not ALL my migraines do the whole “Hey I Look Like I’m Having A Stroke” thing. I’ve had them fifteen years, so it makes sense they’d eventually progress, but I only get “those” maybe once a month or every two months…

Which is probably not very good, but good lord I just can’t handle another medication right now, especially when my options for preventative medications are very limited! I think he actually ran out of ideas for me since Topamax is practically my only choice and it lowers my intracranial pressure. :\ But at least Migraine is a well-studied disease and, should I live long enough, they will probably come out with something new, soon.

 

The best news I have is: (1) I got to visit a friend (actually, I returned to the scene of the crime of where I caught Lyme disease), and I recovered pretty easily from it with all the careful planning and tailored resting schedules. And (2) I invested in a tilting overbed table. I don’t think I have words to describe how useful it is. How have I never thought of this before? Person who is in bed most of the time, desks that go over the bed… Regardless, this thing is amazing. What I really love is the little mini-desk on the side that always stays flat so you can put stuff on it!

 

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. And then an explanation:

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 we did the swab, I was too ill to be bothered with speaking anything not medically-necessary, 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 even the simple things are, or that I try to consciously think about that even when things are going better than usual. Or maybe I’m just naive and give people 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.

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.. well, 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, and enjoy the once-a-year 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 failing) to attain. Now, granted I’ll still be eating like a diabetic because it’s just plain 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 shall simply continue maintence 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 made friends with my wheelchair, now. It was hard for my family and I to take/witness that first 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! “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 however, because of course, it’s me. Sometimes I get stuck in the kitchen or the living room because I misjudged my ability level. Which somehow makes me feel like I’ve failed, because they’re just.. what, twelve meters away? You don’t want to think you 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 you there… Especially if you could have done it half-an-hour ago, but suddenly you can’t? How do you keep up with that? 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:

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

Anything else I take depends upon the day, such as the Candex or 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 going away, 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 a bart-induced rage!) I started the Ubiquinol and L-carnitine back 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…

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 arrhythmias 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 Mum washed my hair in the kitchen sink, with the faucet sprayer! Haha. Our inside dogs looked onward, very concerned as to why their owner was suddenly taking over their bathplace.

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. Tomorrow we are planning an outing… 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 yet again that nothing else was wrong, that nothing else was contributing to my body’s dysfunction except what I already have… 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.

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. (Yes, I really am filled with that much random information.) 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 and very acutely 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 episode 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; 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, and 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?!

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 an.. ugh, absolutely terrible night of convulsing for hours on end, Sunday brought with it a partial recovery, and my fever broke that afternoon. Until that night, when I had a “relapse” of whatever had happened the first time. Again I was making repeated trips to the bathroom, spiking a fever, and vomiting, until by 7am Monday morning I had a famiilar 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 authorization, which can only be obtained Monday thru Friday, and only from my primary doctor. Having no other option, we called the pharmacist with the ER doctor’s prescription and just asked for the pills without insurance: Either I had them, or I was certainly going back to the hospital for dehydration. So $23 later I had a couple of pills to tithe me over and to stop me from losing whatever fluids I had recently gained back. More Tylenol to help with the fever, and by the end of Monday night I was finally on my way to a real recovery, with no more relapsing. 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 later I think being on oxygen all day is actually the best case scenario.

One year ago this week, I got either an infection or a severe herx because of switching to Ceftin (major Lyme antibiotic), that ultimately caused my immune system to crumble and develop a very “determined” candida overgrowth. I’ve been fighting it ever since. Well, let’s just say that, after a month on Sporanox, and those couple of weeks on Vitamin C, then followed by practically everything in my colon being evicted… My tongue has never been pinker. I honestly think my candida problem may be gone. But as for my bloodwork…

Every time I’ve been hospitalized (or near-hospitalized) has been during my Lyme-flare week. So it would make sense that my neutrophils are high (fighting bacterial infections) and my lymphocytes drop (making room for more neutrophils to fight the bacteria). Yes, every time, has been during a bartonella flare, that’s during a Lyme flare, plus some other unidentified combination of pathogens roaming about and giving me random symptoms… Every time except this time.

Because everyone is different, I might should mention that my usual lymphocyte count is around 2 k/cmm, or higher if I’m off of my medicine. 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. To be blunt, this is more like sepsis than a stomach virus; that’s not even a viral response at all! So my question is, how on earth could they tell me I was having a viral infection, when these findings clearly show a bacterial source to the problem?

I’ve never had anything like this happen before. Something that startled me was the fact that I took a probiotic capsule on Sunday night, when I was in recovery (out of habit, really)…and two hours later is when my symptoms began to return, albeit at a less-advanced rate. What did I do on Friday night before I went to bed? Take my probiotics. Now, probiotics causing complications 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 capsule, and, I really did do everything right to avoid getting that stomach bug that was going around…

SO WHAT IF…

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 dose of 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: Basically, 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; I took them again the night before it happened the second time; my candida problems are improved therefore (1) not requiring the same dosage of probiotics that I used to take, which is (2) why I hadn’t been taking them anymore until Friday night; my immune system is not normal and I am a prime candidate for something like this to happen…

I’m not a dramatic person, so to stop and think about this is just.. beyond me: 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 have not the medical degree to know whether I had this or true sepsis. I’d bargin for SIRS due to the fact that eliminating the cause–the probiotics–calmed down my immune system, but then again, I clearly had bacterial involvement, so who knows. But 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 about 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.

My body immediately began its attempt to rid itself of the probiotics from the night before, the moment I woke up on Saturday and my bowels began to move. 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–no authorization to get the medicine because it was a weekend–in order to stop the nausea and diarrhea, that was, in a manner of speaking, saving me. Those symptoms were 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 have basically 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 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 doubt I’ll even be able to wrap my head around this until tomorrow. 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. That’s enough for right now. I think I can be patient with my recovery.

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.

Saturday is a day of rest

The candidiasis is much improved! Today I added back my herbs, as per doctor’s orders. I have one week left on the Sporanox. I first added my olive leaf extract, to test the waters for interactions: I got mellow and groggy. Not a big deal and pretty typical of me first restarting it. An hour later, I added the second and final herb, oregano oil. Things got a little more “interesting.” It always makes me so, so dizzy when I first start it. Today was no exception. I got up to sit at my desk and grab some papers, when the back of my head & neck started to tingle; I had to grab ahold of the desk to stop from teetering over! (And in fact it’s actually happening right now, because I just took the second dose of oregano oil about twenty minutes ago.) So it’s safe to say both herbs are “working” and, with luck, will be the final blow to this persistent candida overgrowth. I’m still taking the Nystatin with no strange episodes of breathing difficulty.

I was mildly dehydrated when I woke up but nothing that several ounces of fluid (well, warm tea, today) couldn’t help. :) I was a little miffed because I thought I’d at least make it to the store a block up the road, but no such luck, when standing up for a couple of minutes made me worse. So instead I opened all the windows and relaxed with some calming music, and sipped my soothing electrolyte-enriched tea while I watched the autumn leaves and admired the pseudo-rainbow the sunlight and my CDs had created upon my ceiling.

And, a few of my online orders arrived, which of course always makes the day of someone bedbound!

This Wednesday I see an endocrinologist to be evaluated for adrenal insufficiency. However, if I have it I won’t be able to treat it, so I’m not sure if I even want to know. (The treatment for AI is steroids, a big “no-no” when fighting chronic infections.) I should then have this week’s bloodwork results back (AND  BY  THE  WAY,  YES,  LYME  DISEASE CAN CAUSE  A  FALSE-POSITIVE  SYPHILIS  TEST!), and while I’m getting the new blood drawn I’ll be checking on my liver enzymes for being on the Sporanox. Then next Wednesday I see that Internist/ID again, to discuss what’s next as far as virus testing. I’ll also have to contact my LLMD (who ironicaly is only available on Wednesdays) about how the Sporanox worked and what we can now do to keep me cleared of these pathogenic yeasts. Somewhere in there I’ll have an appointment with an ophthamalogist. It’s going to be a busy few weeks for my family, full of long drives, needles, lab results and possible diagnoses. I bet you’re thinking “Sign me up!” right? Of course you are. :)

All in all, today has been mellow, with nothing too extraordinary happening, and lots of rest. I may as well save up the energy while I can!

 

 

a rainbow at night

A so-so day

I’m almost weary about making a Vicodin (Lortab) category since I’ve had so many headaches these past few months–I might overuse it!–but… I guess that’s an important fact in and of itself?

I initially started to get more frequent,  incapacitating headaches shortly after I got Lyme; an infection taking up camp in your central nervous system will tend to do that.  Of course at the time, we had no idea I had Lyme disease, so it made no sense that I was getting sporadic attacks of occipital neuralgia. I still don’t get that particular type of headache very often, though I do get a similar type of occipital nerve irritation, to a lesser degree. But nothing like I used to…

On one of my old fibromyalgia support groups, we nicknamed it “occipital suicidal head pain.” Everyone said, “Oh yes, I’ve had those, they make you want to end your life!” Fibromyalgia, huh? Yeah. I wonder how many of them actually had Lyme disease.

My migraine from yesterday has gone away. But, another day, another type of headache. This is the kind that affects my forehead, the top of my head, the back of my skull, and my neck, and that makes my forehead go tingly and then numb. My shoulder hurts a little, but I suspect it’s just referred pain due to my neck being involved. Four-hundred milligrams of ibuprofen helped a little but wasn’t enough, so 3.75 mgs of hydrocodone and 250mg of acetaminophen later, I’m okay. (That’s half the dose of everything.) This pattern of headache is actually.. ha, well, it’s actually an exact description of one of my occipital neuralgia episodes! But it’s no where near as severe, so whatever is causing this one must be minor. I hope this will just be a one-nighter and not evolve into one of those four-or-five-day events.

Concerning yesterday’s breathing incident, I noticed a strange coincidence. I said, “It’s not a medication reaction,” because it happened before I took my Sporanox. But what I didn’t consider was the Nystatin, which after I updated my post a second time, I realized I took an hour before both episodes. Now, I’ve been on Nystatin a lot before, including in combination with other meds, so I’m not prone to thinking that it could have caused my sudden breathlessness, and in fact I’m not even sure if it’s capable of causing such a thing, however… I did not take any today. Tomorrow I shall take it again, and if I have a repeat episode, we’ll know it must be the Nystatin, and that I simply cannot take it with the Sporanox. And that wouldn’t surprise me, actually, because the latter interacts with everything known to man. I’m just so thankful that it doesn’t interact with either of my primary pain medications, or I’d be one very, very miserable person.

But I really think the Sporanox is going to be the medicine that helps me with the candidiasis. The fuzzy coating on my tongue is just like.. a normal fuzzy coating, that anyone would have in the mornings. And my digestion is better, so much better! Candida overgrowth in the gut tends to cause constipation. Or “irregularity,” as the mainstream media is calling it these days. Whatever name you give it, not exactly my idea of fun. But it’s better, and it hasn’t been in months! Neither the Diflucan nor the Nizoral gave me that relief. And I’m on day ten of twenty-one! Woo! This might be “it”!

a rainbow at night