I've had a rough two years. They haven't been horrible but I can't seem to get out from under "infection" stage. I go on IVs, I feel better, my cough is near nil, I go off IVs and less than two weeks later, my PA is "flaring up" again. I try and ride it out sometimes, other times I hit it with oral abx. When that doesn't work I go back on IVs again.
The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.
Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.
When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.
I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.
After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.
Ideas?
The results of my most recent culture are pretty typical for me.
1+ Pseudomonas aeruginosa resistant to all abx tested, except Imipenem and Meropenem.
1+ psuedomonas aeruginosa (mucoid) susceptible to Cipro, Doxy, Imipenem, Gentamicin, Minocycline, Tobramycin, Piperacillin and Meropenem.
1+ mixed respiratory flora (whatever that is???)
Few Gram Positive Cocci
Few Gram Negative Rods.
Based on my history, and based on my susceptibility, is there any treatment you have tried that worked? I hate feeling "almost" sick all the time. I'm tired of being tired. I use supplemental oxygen at night for low sats. And right now I just came off inhaled Aztreonam (old school style) and went onto TOBI as well as 750mg Cipro BID. I don't think it's going to work.
When I feel like this, somewhere between totally exacerbated and normal, I get fevers, 99.2 is where it likes to hang out and overall I feel crappy.
I'm looking for a miracle regimen. Anyone have anything they tried that worked? Non conventional? Could it possibly be my diet? I don't eat that great, mostly meat and carbs. I like my sweets too. Why am I having so many flare ups? I guess it could also be my age. My weight is stable without even trying, although I do take enzymes.
After IVs my FEV1 hovers in the 1.57 Liter range. Within two weeks, I can tell it is decreased. Right now I'm half way between feeling really crummy and feeling ok. My FEV1 is 1.48L See?? It's not that different. But the quality of life for me even with that tenth of a drop is HUGE. So there you have it. I'm willing to try anything.
Ideas?