Mycobacterium Avium complex

[Stinni]

Hello hope your all well This is my first post even though ive been a member for a good while and as title I was wondering if anyone suffers with MAC Disease ?

Dave

[patmc1]

I just want to say "Hi" and then I'm off to Google MAC. I'm pretty sure That's one condition/disease I don't have (yet) but I hate seeing an unanswered query.

[Stinni in reply to patmc1]

Hello Patmc1

Thanks for saying hello and I hope its one disease you don't get as its rare and not very pleasant ..... I really didn't need this on top of my other conditions

Dave

[Merrygoround]

Hi Dave

I was diagnosed with Avium Intercellulare in 2013 which is part of the Mac group and spent 2 yrs on TB meds ! I am now clear but unfortunately I now have Bronchiestatis due to coughing for so long ! It’s not so bad as it’s only mild . Can I ask how long you have been diagnosed and what treatment receiving ? I found a site for the mycobacteria and I will send you the link .

Best wishes

Sharon

[nancye in reply to Merrygoround]

I have mycobacterium avium, diagnosed 7 years ago at 74 years of age.. I have bronchiectasis as well and get various lung infections. I took the tuberculosis medications for almost two years, then medication for a scedoporium mold for 5 months. For several years now just nebulizer and inhaled medicines for airway clearance plus a percussion vest and an Aerobica device. I get some sort of flare 3 to 4 times a year which lasts several weeks, usually followed by a period of feeling very good (because usually have an antibiotic then, I think). I am also on oxygen 24/7. Sometimes the first blast of medicine eradicates the MAC but more commonly it just goes underground and simmers, indolently, and periodically gets going for a flare. It is most susceptible to the drugs when it is active. It is definitely a life altering diagnosis but in my experience quite manageable.

I can recommend NationalJewishHealth.org as a source of good information. National Jewish is considered the top one or two institutions in the US for MAC and related infections. Also NTM.org has good information. Get the most experienced doctors you can find; it seems many have never heard of it.

Good luck. I will be happy to share experiences with you.

Nancy

[eastend]

Hi I had this 5 years ago when I was 62, and was on meds for 18 months. Not pleasant for first 6 months but better as meds were adjusted later on. Made a good recovery but now have the possibility that it may have returned. Samples to be handed in over next three weeks and outcome should be known by end of August. I am not on oxygen and don't use a nebuliser. I do hope your treatment proves successful. Good luck.