I officially started the Doxycycline! 100mg last night made me dizzy…which is the first thing any new antibiotic does to me, I’ve learned. After my dose of Rifampin today, I developed tremors, dystonia (in my hands, of all places), facial grimacing, muscle spasms in my back, and a terrible headache with pressure in my skull, just half-an-hour later. Additonal pain medication has made me comfortable, and it’s safe to say this combination is looking to be very effective.
Today the technician came to evaluate my oxygen machine. I had to explain all the strange quirks I have, like why my oxygen reading was normal when he took it, why I change the output fairly often and how my various conditions impact what I require from this thing. I also got a new nasal cannula (the part that you wear on your face) and a 25ft cord so I can enter the bathroom (right around the corner) without having to take off the oxygen. That is going to be very helpful, because up until now I’ve had to practically race to get back to it before I felt faint. (I also have a 50ft cord/tube in case I want to go sit on the couch in the living room, which is just past my hallway!). Ironically I haven’t needed any oxygen yet today, haha.
After some research on bartonella. I’ve found the best way to eradicate it in someone with severe neurological involvement who is also immunocompromised seems to be, Doxycycline 100mg b.i.d. (twice-a-day) and Rifampin 300mg b.i.d. The latter is usually taken once-a-day (q.d.) for several other conditions–which is what I’ve been doing since my LLMD said it was okay–but ideally, the best results are obtained from spacing it out. Some claim that it makes it easier on the person, but given my circumstance, I don’t know. Nonetheless, I’m going to aim to take both the Doxy and Rifampin split into two doses, and see if it causes any candida problems (which is my main fear, besides the herxing). If it does cause problems, I shall try going back to Rifampin 600mg once-a-day and Doxy still 100mg b.i.d., and, if all else fails, I’ll just have to take them both once-a-day.
But of course right now I’m still at 100mg q.d. Doxy, so all of that other stuff begins next week.
The American Society for Microbiology recommends this regimen for at least 6 weeks in healthy individuals, but for longer if that person’s immune system is dysfunctional. They also warn of life-threatening herxheimer reactions in the immunocomprimised. Having already been hospitalized twice for severe reactions to things that shouldn’t have caused such a reaction in “normal” people, it really drives home the need to be very, very careful. *big breath*
Of interesting importance is that only Doxycycline, Rifampin, and Gentamicin have shown true effects against bartonella. This makes me wonder whether other antibiotics simply haven’t been tested enough to know (if you’ve never looked, how would you know?), or if they have been tested, and the others–such as Levaquin and Bactrim–just don’t stand up. I did find one study which claimed because Bartonella can so quickly develop a resistance, quinolone antibiotics (such as Levaquin!) should never be used aginst bartonella species! *gasp* Now doesn’t that blow everything else out of the water? Granted, it’s only one study.
♥ a rainbow at night