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

Lower Rifampin dose, Migraine, still no caffeine

Sunday night I realized I couldn’t go through with the 600mg Rifampin. As I mentioned in my last entry, that day was very rough, and after my night dose, things only got worse. The herx reactions I was getting were severe, mentally and physically, and I felt I might take a bad turn, if it was that early in treatment and I was already feeling that horrible.

Monday I called my LLMD and he has now put me on 300mg, instead. Which I was taking the first week and handling all right… But I started getting that severely weak feeling again, like something was just wrong. So for now, 150mg twice a day, and hopefully in another month or two I’ll go back up to 600mg. It would be terrible if we tried to do too much too fast and ended me in the hospital yet again. My body can only take so much! I have the feeling being on Azithromycin along with the Rifampin is what made it unbearable, since it was adding Doxy to my Rifampin 600 dose that sent me over the edge last time. And Zithro works like Doxy does–prevents the bugs from replicating, including bartonella. More dying bugs, bigger herx, more strain on my system to keep up, more risk of hospitalization. If we can avoid that, we must.

Last night, right before bed, I introduced Splenda/sucralose in the form of three sugarfree cookies. That was a bad idea.

I awoke at 7am with a Migraine. I’m really against Treximet unless it’s serious (such as maybe another ocular migraine, or stroke-like symptoms) so I figured, why not see if my body is still reacting to caffeine in an abnormal way? I’ll have a cup of coffee like I used to when I got rid of Migraines. Another bad idea.

Let’s just say I’ve spent the majority of today in a feverish, tremoring, nauseated, irritable bowel-ridden fit of dysautonomia. And I haven’t even gotten to take my antibiotics yet! The caffeine woke up my digestive system far, far too much. And you know what that means: Let the nervous system dysfunction begin. I was going back and forth to the restroom (quite a perilous journey for someone with tachycardia) for frequent urination and “other” things, all the while experiencing the terrible symptoms I described last time this happened. I was scared I was going to dehydrate at the rate I was going, but I was able to get down a bottle of water (gradually) and a cup of hot soup once my bowels calmed themselves. I could have saved a lot of hassle by being able to take Zofran (ondansetron) but after getting a friend to check the interactions for me, he said that it interacted with my Zithro in that it could cause an inceased risk of arrhythmia by means of QT interval…the same mechanism that disallows me to take Diflucan. (I mean, sure, that would have been fairly decent “proof” while I’m wearing this holter moniter, but not at the risk of going into cardiac arrest!)

It’s safe to say caffeine is still on the “no” list, as is anything with sucralose in it. Lesson learned. I can only handle the meager amount of caffeine in my Fioricet tablets (which at the dose I take, is only about 10-20 mg).

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