I’ve been growing mycobacterium abscesses since 2008. I first underwent treatment for it in late 2008 into 2009 because it was having a negative impact on my health. This initial treatment started with some IV antibiotics, but was primarily orals. My health improved somewhat, but I continued oral Cipro and Zithromax after the other meds were stopped. In late 2010, I started having problems again and we decided to start more aggressive treatment. Before the treatment started, I did four weeks of IV antibiotics targeting pseudomonas to confirm that this wasn’t causing my health problems. I didn’t respond to the pseudomonas treatment, so I next started abscesses treatment in March 2011. I was initially told the treatment would last 18 to 24 months. Although my doctors warned me that I would never entirely eliminate the abscesses from my lungs, the goal was to get twelve months of negative AFB smear results.
I have had many ups and downs since starting treatment. Without going into too much detail, I have never been able to get more than three or four months of negative AFB smears. Last August, my health declined at the same time I had started to again grow pseudomonas. In order to treat the pseudo, I temporarily stopped my Cefoxitin IV. After two weeks off of the Cefoxitin, I had a horrible flare up of the abscesses. I had fevers and chills, low energy, no appetite, a big drop in my FEV1, and felt miserable. I ended up in the hospital for six weeks. Initially, they weren’t sure what was wrong, but eventually confirmed it was the abscesses. Since leaving the hospital in October, I have been on IV Cefoxitin and IV Amikacin along with oral Cipro, Zithromax, Linezolid and Clofazimine. My CF team works closely with a doctor who specializes in Nontuberculous Mycobacteria (NTM) infections.
I recently saw my NTM specialist. He is talking about discontinuing one of the oral antibiotics after I’m stable for three months (counting from late December). He said if this year goes well, we can start to phase out the Cefoxitin towards the end of the year. The phase out schedule would last about six months by initially going to five days a week and then three days a week. If I am stable this year, my IV treatment will have lasted 4 1/2 years! If I’m not stable, it could be even longer.
I’m discouraged that I’ve been on IVs for so long and still have a long time to go. At the same time, last year's flare up worries me that the IV drugs are necessary for a decent quality of life.
I’d be interested to hear from others with mycobacterium abscesses who have undergone treatment. How long were you on IVs? How successful was the treatment? Any other experiences or advice? I saw several past threads related to this topic, but they were several years old and no one seemed to be on IVs for long periods of time.
Thanks for your comments.
I have had many ups and downs since starting treatment. Without going into too much detail, I have never been able to get more than three or four months of negative AFB smears. Last August, my health declined at the same time I had started to again grow pseudomonas. In order to treat the pseudo, I temporarily stopped my Cefoxitin IV. After two weeks off of the Cefoxitin, I had a horrible flare up of the abscesses. I had fevers and chills, low energy, no appetite, a big drop in my FEV1, and felt miserable. I ended up in the hospital for six weeks. Initially, they weren’t sure what was wrong, but eventually confirmed it was the abscesses. Since leaving the hospital in October, I have been on IV Cefoxitin and IV Amikacin along with oral Cipro, Zithromax, Linezolid and Clofazimine. My CF team works closely with a doctor who specializes in Nontuberculous Mycobacteria (NTM) infections.
I recently saw my NTM specialist. He is talking about discontinuing one of the oral antibiotics after I’m stable for three months (counting from late December). He said if this year goes well, we can start to phase out the Cefoxitin towards the end of the year. The phase out schedule would last about six months by initially going to five days a week and then three days a week. If I am stable this year, my IV treatment will have lasted 4 1/2 years! If I’m not stable, it could be even longer.
I’m discouraged that I’ve been on IVs for so long and still have a long time to go. At the same time, last year's flare up worries me that the IV drugs are necessary for a decent quality of life.
I’d be interested to hear from others with mycobacterium abscesses who have undergone treatment. How long were you on IVs? How successful was the treatment? Any other experiences or advice? I saw several past threads related to this topic, but they were several years old and no one seemed to be on IVs for long periods of time.
Thanks for your comments.