Microbacterium aviam, kansasi

[anonymous]

I've cultured out m. aviam, m. kansasi and am now being treated with an antibiotic cocktail for at least the next six months. They put me on rafampin every day, zithromycin and ethambutol three times a week. Has anyone been on these? How was it? The rafampin turns my tears and pee orange! Also, I have CF osteoperosis and am using Actonel once a week. I'm 22 and my spinal bone density is -3.4 (like an 80 year old!) Any one else dealing w/ this?Debbie22 yr old w/ cf

 

[anonymous]

DebbieI cultured atypical mycobacterium when I was 11. It attacked my lungs before anyone knew it was happening, and I unfortunately had to have surgery to remove the damaged lower left lobe of my lung. Anyway, that is not the point, and certainly wasnt meant to freak you out. I was however, on a "cocktail" of 4 drugs, two of which were Rifampin and Ethambutol. (The others were Biaxin and switching off between cipro and bactrim). Anyway, yes I know about the rifambin turning things orange! haha. Anyway, I was one these 4 drugs for 4 1/2 years, and since the mycobacteria had caused such a problem early on, you can imagine how FRIGHTENED i was when my doctor said "I think its time we take you off these drugs." I would have been happy to stay on them forever, somehow it just felt safe. However, during those 4 1/2 years I successfully eradicated those bugs, and reached a point where i was MUCH healthier than I had ever been, despite my loss of a portion of my lung. Some people dont believe in so many pills & drugs, but with something like mycobacteria, i say, put me on as many as possible. I am glad my doctor was so aggressive. Good luck! and you are lucky you caught the mycobacteria before it caused more problems.-C20w/cf

 

[anonymous]

C- Thanks for the response. May I ask how removing part of your lung affected you? It hasn't been discussed at length yet, but I'd like to know how it was. I agree that agressive attack is best sometimes. Debbie 22 yr old w/ cf

 

[anonymous]

Debbie-Having a portion of my lung removed is certainly no fun, but since I havent known what it was like to have two whole lungs since i was 11, i dont really remember noticing a difference. The lung expands to fill a good deal of space, and the rest the body fills up on its own, with fluid etc., which is interesting. It is not as if there is just a hole there. Although i did have a major problem with a pneumothorax (air bubble) in that portion of my lung that wouldnt go away for months and then magically dissapeared- which is to this day unexplained. But that is another story! Anyway, it only really effects my PFT's, mine are abot 40-45 percent but i guess that might be equal to about 60 percent of a person with full lung function.after my surgery i played sports all through high school, and did well....i dont exercise as much anymore but if i did i can get myself back in shape. anyway, i was curious (if anyone else is reading this) if anyone else had to have a similar surgery?-caitlin