Well, I'm hoping that this post won't be deleted, but who knows! (He he, sorry couldn't help myself).It turns out that I do have non-tuburcular mycobacterium avium complex. It's a bit of a mouthful. Anyhow, I am not excited about it. But I am happy that I will finally get treatment. I have lost 15 pounds in the last three months and have been tired beyond belief. I've been hospitalized twice in the past, but it still surprises me when I get sick. I still consider myself a lucky and healthy cfer.The happy news is that I started treatment for it yesterday. Already my stomach is protesting, but that was to be expected. I am not protesting. I can't wait until I can start to work out again without getting a fever! Woohoo for me!-Nichole
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Some happy news....
- Thread starter Nichole
- Start date
Nichole, Do they refer to this mycobacterium avium complex ever as an "a-typical mycobacteria." I had a problem with that a while ago and haven't heard of anyone else with it. Was wondering what hospital you are treated at, if you dont mind, or even what medicines you are on for it. I was treated with Amikacin (spell?) that had to be given through IV. The problem is related to tuberculosis, although it is NOT tb, and since you wrote in your post "non tubercular" i thought that you might have the same thing i had, but just called by a different name. also what what were your symptoms.-C
Hmmm, well, I wonder if they are different things. I have to take three different antibiotics for 2-3 years, the main one being clarithromycin, and they are all oral. I am being treated at the University of Washington Medical Center in Seattle, WA.My symptoms have been mostly really high fevers and nightsweats. Lots of nightsweats. I've also lost quite a bit of weight, which is odd for me. I've never had any difficulty in keeping weight on. It really has just been a slow decline. My FEV1 has gone from being 92% in november to around 75% as of last monday. I haven't been coughing all that much. Usually when I get sick I just cough a lot more. This was really such a slow decline.I was just researching it a bit (but it's hard because there isn't all that much info on it), and it looks like there are 28 different kinds of non-tubercular mycobacteria. Just out of curiosity, how long did you have to take medication for it? It seems like IV's are always faster than oral antibiotics, and if I could end treatment any sooner I would like to do that. It's silly, but I won't be able to drink on my 21st birthday, despite the fact that it is a year and a half away, because of the treatment for my infection.It's tough sometimes being the age I am and not being able to drink or smoke. Not that I would abuse the privelege or anything, but to not be able to at all is frustrating. I guess I will just have to wait for my friends to realize that it is possible to have a good time without being intoxicated. -Nichole
While researching a condition I had when I was 2, I couldn't help but reply to your comment. I too was told that I had "a-typical microbacterium". I was treated at Riley Children's Hospital in Indianapolis, where I had several of the lymph nodes in my neck removed. This was in 1983, so I was wondering what new info has been found on it. At the time, I was 1 of 5 cases in the state each year, and they had to do a battery of tests just to figure out what it was. They also referred to it as a-typical tb, but I'm beginning to wonder if it's the same thing. What was your case like?
Thought I would bring this to the top again and see if anyone had any information or insight on non-tuburcular mycobacterium . Our son has been on Tobi and Cipro for a month with improvement in one area and decline in another area of his lungs. The Dr. told me he was waiting on additional tests to come back to determine if this is a cousin of TB. He said there are several types of this bacteria which are not harmful but some of them are very harmful - similiar to TB. The treatment is 6 months of "obnixious" antibiotics he said, some can can cause liver damage.
We are set for a Bronc Scope on Tuesday then will likely be admitted for IV antibiotics.
Does anyone have any current information on this?
We are set for a Bronc Scope on Tuesday then will likely be admitted for IV antibiotics.
Does anyone have any current information on this?