Hello ehliny! If your Pulmonologist sees a lot of MAI patients .. you should be just fine. You are blessed to have found one! MANY have LITTLE exposure/experience with the disease .. you really have to do your "due diligence" as a patient with this disease! We are our own best advocates .. knowledge is power! Stay on this forum .. we learn from each other!

Thank you Paula! I was just ELATED when told I did not have to come back for a YEAR!! Almost did a jig!

Hi Ehliny, I saw your post earlier about the twice-daily saline solution treatments to induce coughing. Other than going to the Army clinic to inhale the saline solution to produce sputum cultures for them (because they thought I was perhaps cheating on my sputum tests or something). I am happy to say that I do not have to do the nebulizer on any type of regular basis. But it was a bittersweet victory of demonstrating my proof to the Army docs that it was my own true sputum producing the MAC, I was also coughing up blood because the saline was irritating my airways. This episode was 08-11FEB16, and on 25FEB - the first culture had already come back POS for MAC.

My pulmonary doctor at UNC had suggested a flutter device to help break up the congestion in my lungs. I still find that exercise (even walking) works BEST.

To your next comment about treatment - MAC is essentially an emerging disease in that the symptoms and total body effect are far-reaching and may at first be subtle or severe. Mycobacteria has no place in the human body - this species is among that which causes tuberculosis and leprosy. Although M. avium is different, a relative to these more aggressive species of mycobacterium, it is just as dangerous it its own right. If you have tested positive for MAC, and your providers are hesitant (or ignorant about mycobacteria avium colonizing within your body) on developing a treatment plan to eradicate the fungus-like infection in your lungs - other than just trying to have you cough it up - you need antibiotics.

I have been in contact with my Congressman for nearly eight months now to get back on the antibiotics that my Army doctors stopped after only five months of treatment (with only 2 antibiotics). All sources say three to five antibiotics for 12-18 months of treatment with life-long follow-ups. There is a bounty of information out there about MAC. The National Institutes of Health is a good source. My doctor at UNC said some of the patients that come into his office for MAC treatment do not partake in the antibiotic treatment, that some sub-species of MAC have become too resilient to antibiotic treatment and the infection cannot be stopped – but managed with exercise, diet, productive coughing, etc. When the symptoms such as fevers, night sweats, or blood-work anomalies are introduced or in occurrence with the infection your treatment must be re-evaluated.

I hope this helps.
Best wishes,
Yours truly,
Melissa

All good information. I have had MAC for about two years now, but so far<br />
not a great lot of distress with it. As I have rather severe reflux<br />
problems it is hard to tell what is cousing the most distress. But so far<br />
nothing that i can't live with and have quite a good life for an 86 year<br />
old. I just got back from a 3 block walk at 5 PM. Am wintering in Arizona.<br />