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

Another LLMD visit

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 Diflucan 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 Diflucan works the best for me, there can’t be any “saving the Diflucan 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… Ha! 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… Huh, I wonder if that has any connection to my breathing? Ha, we’ll see!)

I updated my Blog dictionary as well as the My story section. I also 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.

My room smells like flowers.

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