TB ?

[anonymous]

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?

 

[anonymous]

This actually happened to me. I tested positive for mycrobacteriums avium and kansasi. I cultured them out for about six or seven months before I decided to go ahead with the antibiotics because they were wiping the floor with me. I go to the adult CF clinic at National Jewish Research Center in Denver, there are some specialists here who do nothing but deal with these mycrobacteriums. Maybe ask your doc if they are in touch with them b/c Nat'l Jewish is the #1 respratory hosp. in the country. Maybe check their website, they may have some lit. on it.

The antibiotics were really tough. I took three :zithro, rifampin (turned my pee bright orange!) and started with ethambutol. All were oral, but the schedule was more demanding and the side-effects were awful. I took zithro MWF, rifampin every day, and ethambutol every other day. The ethambutol made me vomit, like clock-work, so I tried taking it at different times to see when I was least bothered by it. Eventually I told them I couldn't keep doing it b/c my weight was such an issue that I wasn't willing to vomit every day. They switched me from the ethambutol to inhaled amakacin. I did this MWF, and had to mix it w/ saline myself to neb. it. It took about 30 min. to do.

They also upped my rifampin dose and it gave me fevers and horrific joint and muscle pain about an hour after I took it EVERY TIME. It was so bad that I wouldn't be able to do anything but lay in bed or sit in a hot bath until it broke. The fevers were never higher than 101 but they pain was awful. If I absolutly had to go do something, I would take asprin or tylenol or IBp. My docs said it was way more important to knock out the mycrobac, so I took the stuff before I went to bed and just delt with it.

I was on these for almost a year, BUT I killed the stuff off and have felt so much better since. I had to have my liver functions checked every other month and there was never any damage done. It can sometimes take several weeks for mycrobac to grow out in a mucus culture, so you may not have an answer right away.
I have to run, but please post again if you need more info!
Debbie
24 w/ CF

 

[anonymous]

Thanks for the information - Glad to hear you got rid of this.

Any idea where you picked this up? How old were you when you cultured these?

Our son is only 7 and has been fairly healthy until this year. He was on IV's this spring for pneumonia which got rid of the infection - This was his first hospitilization since diagnosis at 8 months. The Dr. is currently seeing "inflamation" in the lungs which has him concerned. He is currently on Cipro and inhaled Tobi which has not gotten rid of whatever is growing in his lungs. We are hoping that this is something not related to the TB bug but I think this is what our Dr. suspects. We have a chest CT on Monday then a Bronc on Tues. and get admitted for IV's.

We go to Children's Hospital in Little Rock and our Dr. has another patient with this bacteria. He has been talking to the UNC-Chapel Hill center and getting his information from them. He says they have done alot of research in this area.

Thanks

Mike

 

[DebbieC]

We're pretty sure I got them from a basement apartment I was living in my junior year of college. Great people, close to campus, a little dinghy. What I learned from folks who knew the girl who lived there before me that there had been massive plumbing problems (some of the real nasty kind) and there was all sorts of mold growing behind the walls. The landlord had neglected to clean it or have it inspected, I guess b/c he only rented to kids.
I started culturing a few months after my 21st b-day, and treated it when I was 22.