@lmh7, Hi. Do you have a first name I can call you, or would you rather stay with lmh7? Your news is very disheartening, and I am sure you must be pretty upset by it. I am sorry that this has happened to you. The only advise I can offer right now is to do nebulized saline treatments twice a day if you aren't already doing that. Have you read in the 'Discussion' list 'How To Avoid Reinfection'? Some theories about why we get re-infected is because we are doing the same things that got us there in the first place (supposedly). A good example of that would be getting into hot tubs, potting plants with potting soil, swimming at indoor pools, showering.........what are your thoughts?

@lmh7 I also wanted to add that it does sometimes happen that people get re-infected while on their 'Big 3' because at some point in the treatment process; the bacterium became resistant to the antibiotic. Every one of us should have a hard copy of our lab results from sputem or bronchoscopy or biopsy from our lungs. Along with the results we need the SUSEPTIBILITY TEST that was done with it. Have this in it's own file folder. As the years roll by, you will see why this is important.

Hello @windwalker: So far I have not been doing any nebulized saline treatments so will ask my doctor about that. After first being diagnosed in March 2017, I asked my Mayo doctor about how to avoid reinfection. He said "Just avoid indoor hottubs and don't worry about it as there is no way to avoid it". When I became sick with MAC symptoms again after a year while still on the 3 antibiotics, I learned by way of scouring the web that there are many ways to avoid the bacteria. I am very discouraged that he didn't tell me the facts so I could have helped myself. I am now doing everything recommended to avoid it. Also, I am wondering what a suseptibility test is that you mentioned? Is it possibly a list of drugs that will work with the strain I am infected with? I am now waiting for the bronchoscopy results to come back so maybe it will come along with it?

@lmh7, I feel certain that a suseptibility test was automatically done with your lab test, especially if it were done at the Mayo. You can call and request a hard cipy of your lab tests from the sputem test along with the suseptibility test. That is a test to see which antibiotics will and will not work to treat it. Each and every one of us should have these hard copies in our possession; in our own file.

@windwalker, @jkiemen, Yes they are doing a suseptibility test and I am waiting for it to come back. I am actually just as concerned now with the neuropathy that I am having in my feet and hands. I assume it was caused by the ethambutol. I quit taking it 2 months ago and the neuropathy seems to be getting worse. Has anyone had this happen? If so, has anyone had it go away in time?

@lmh7 Per your statement that the dr never told you how to avoid re-infection.....as great as I think my dr is, he never mentioned those things either. He was solely concentrating on how to treat it. Being the researcher at heart that I am; I had looked up all that I could find to learn about my disease, and so that is how I learned what to do. Then joining this support group here also contributed to learning more. Moral of the story is: We must be our own best advicates!