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MAC - the bacteria

C

CowTown

New member
I've been posting a lot of questions lately, and I hope it's not against "forum etiquette" to ask so many, because I have another. I am just so curious.

Does anyone have the MAC bacteria? I never remember what the full name is, but it's an airborne bug. I don't know much about it but I'd like to hear someone else's experience with it and how your docs treated it. I've had MAC for about 8 years and they're starting to think about treating it now. Apparently there are 3-4 different drugs you have to take and my doctor has mentioned being slightly worried about how my kidneys will react. I will have to have mu kidneys closely monitored while I start up on these medicines. Anyone else have experience with this little critter?

Thanks,
Kelly
 
C

CowTown

New member
I've been posting a lot of questions lately, and I hope it's not against "forum etiquette" to ask so many, because I have another. I am just so curious.

Does anyone have the MAC bacteria? I never remember what the full name is, but it's an airborne bug. I don't know much about it but I'd like to hear someone else's experience with it and how your docs treated it. I've had MAC for about 8 years and they're starting to think about treating it now. Apparently there are 3-4 different drugs you have to take and my doctor has mentioned being slightly worried about how my kidneys will react. I will have to have mu kidneys closely monitored while I start up on these medicines. Anyone else have experience with this little critter?

Thanks,
Kelly
 
C

CowTown

New member
It's something like.....Macrobacteria (or micro) Aviary, something or other. I only remember there's something to do with aviary (birds). I'm so unclear as to the full name that I can't find anything on it in searches. I know it's somehow connected to CF because my doctors know all about it.
 
C

CowTown

New member
It's something like.....Macrobacteria (or micro) Aviary, something or other. I only remember there's something to do with aviary (birds). I'm so unclear as to the full name that I can't find anything on it in searches. I know it's somehow connected to CF because my doctors know all about it.
 
B

blindhearted

New member
I don't have it...but I went to WebMD.com and put in MAC Bacteria (which name is Mycobacterium avium complex). That's all I found. Don't even know if its the right name or not, but maybe you can look things up from there. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

blindhearted

New member
I don't have it...but I went to WebMD.com and put in MAC Bacteria (which name is Mycobacterium avium complex). That's all I found. Don't even know if its the right name or not, but maybe you can look things up from there. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
I've had it (mycobacterium abscessus, there are different kinds) and been treated for it twice. I cultured it for many years before my docs felt it needed to be treated. You're right, the treatment involved many months of treatment with multiple drugs. Depending on what kind of mycobacterium you have, you can either be treated orally or with IV antibiotics. Mine required IVs. I did Ceftaz and Amikacin IV with oral Biaxin for 6 months then a year later did Ceftaz, Imepenem, Amikacin and Biaxin in addition to inhaled Amikacin. That worked well for me. I did have some hearing loss (even with low-normal levels) and ran into some kidney difficulties, which resolved once I stopped the drugs. The hearing loss, unfortunately, is permanent. I can still hear, but not high frequency sounds and I have tinnitus (ringing in the ears) Feel free to get in touch if you have any questions. knunnari@comcast.net

Kim
40 w/cf
 
A

anonymous

New member
I've had it (mycobacterium abscessus, there are different kinds) and been treated for it twice. I cultured it for many years before my docs felt it needed to be treated. You're right, the treatment involved many months of treatment with multiple drugs. Depending on what kind of mycobacterium you have, you can either be treated orally or with IV antibiotics. Mine required IVs. I did Ceftaz and Amikacin IV with oral Biaxin for 6 months then a year later did Ceftaz, Imepenem, Amikacin and Biaxin in addition to inhaled Amikacin. That worked well for me. I did have some hearing loss (even with low-normal levels) and ran into some kidney difficulties, which resolved once I stopped the drugs. The hearing loss, unfortunately, is permanent. I can still hear, but not high frequency sounds and I have tinnitus (ringing in the ears) Feel free to get in touch if you have any questions. knunnari@comcast.net

Kim
40 w/cf
 
C

CowTown

New member
Wow, I guess this MAC is more unusual than I thought. Thanks Kim for your info, I think I'll contact you because there just isn't much info at all out there (even on WebMD.com) to learn more on my own. The docs never seem to give me enough information either, they skim over it.

Kelly
 
C

CowTown

New member
Wow, I guess this MAC is more unusual than I thought. Thanks Kim for your info, I think I'll contact you because there just isn't much info at all out there (even on WebMD.com) to learn more on my own. The docs never seem to give me enough information either, they skim over it.

Kelly
 
A

anonymous

New member
If you mean non-tubercular mycobaterium infections, I remember several discussions about MAC on the Chechire Lung board (see <a target=new class=ftalternatingbarlinklarge href="http://www.cheshire-med.com/forums/cldforum.html">http://www.cheshire-med.com/forums/cldforum.html</a> )
and there's info here <a target=new class=ftalternatingbarlinklarge href="http://www.ntminfo.com/
">http://www.ntminfo.com/
</a>good luck,
-LisaV
 
A

anonymous

New member
If you mean non-tubercular mycobaterium infections, I remember several discussions about MAC on the Chechire Lung board (see <a target=new class=ftalternatingbarlinklarge href="http://www.cheshire-med.com/forums/cldforum.html">http://www.cheshire-med.com/forums/cldforum.html</a> )
and there's info here <a target=new class=ftalternatingbarlinklarge href="http://www.ntminfo.com/
">http://www.ntminfo.com/
</a>good luck,
-LisaV
 
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