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

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