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

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