Mycobacterium abscessus

[DougB]

Hi,
I was diagnosed with Mycobacterium abscessus 6 years ago and have had problems with it the past 2 years. It is a multi-drug resistant strain that poses a big problem with trying to control it, let alone get rid of it. To make matters worse, I also have ABPA (allergic bronchopulmonary aspergillosis) which causes increased inflammation of my lung tissue and mucus plugging. The usual treatment is steroids and antifungals. Steroids make the Mycobacterium grow faster and I hallucinate on the antifungal medication I was given. I am wondering if anyone else is facing any of these issues, and what have you been doing to help?

 

[AnAnGeL]

Hi Doug. I was diagnosed with that just just before my transplant this summer. The meds I was in was horrid. I didn’t do well at all. Now I’m not in anything after 3 months. Plus the drugs interacted with my anti rej drugs. I know it’s not help but I know what youre going thru.

 

[carolinen]

Really sorry to hear about your situation. I am in the same place. Abscessus diagnosed 6 years ago, and Aspergillus more recently. The abscessus is by far the worst of the two for me, and my docs are concentrating on getting some kind of control. The good news is, that although the initial intensive treatment was not successful in eradicating it, repeated cycles of ivs are keeping things fairly stable. The treatment is awful, with unbelievable nausea, but it's so worth it, because in between I am able to live a good life. The difference is, that I don't have abpa, so I've not had to be on steroids. But I do have an immune deficiency, which has pretty much the same effect. One piece of advice or reassurance I have is, not to be frustrated while your team investigates and plans. It can seem like an age while they get sensitivities and make their minds up what to do, but these infections are slow burners, and treatment is a difficult judgement call. Wish you well. Oh, and do your chest physio and some exercise - I am convinced it has contributed to keeping me alive

 

[DougB]

Thanks for the replies. I also had IV medications for about a year over the past year and a half. The first treatment seemed to be working until I got pancreatitis (first time in my life) from Tigecycline. That was one drug that I was not resistant to. Now I can't use that antibiotic which makes things even more difficult. It made me nauseous for 3 months until the pain of pancreatitis abruptly ended that treatment. I actually was negative for Abscessus when on that treatment and everyone was optimistic. I do all my treatments without exception. My family plans everything around them and my wife makes sure I don't skip a single treatment. I was also very active until the Abscessus slowed me down but I still force myself to exercise.