hi tdrell, I am not familiar with the NTM acronym, please explain. I live in Seattle WA. My doctor is a phd/md who specializes in lung deseases. I have had X-rays, Ct, na breathing test and sputum analysis. Current plan is to watch and wait. This is what is not clear to me. My doctor told me that the deterioration of my bronchial tubes was due to MAI, but the flare ups are caused by a secondary bacterium that enters my lungs as a fortuitous event caused by a build up of mucus. That can be successfully dealt with by a number of antibiotics. Now my question is: what is the purpose of the triple antibiotic procedure. I assume it is to attack the MAI. That leads to another question: what about the MAI? Is it continuing to destroy my bronchial tube as we speak. How do I know? What are the symptoms? How does one know? Do I have to have another Cat scan to know? This is all very confusing to me. I hope someone can explain this whole process to me in very simple terms. What about the MAI? What is it doing. Does it go into remission, and how would I know. Does the MAI have symptoms other than lung damage. All very confusing and I'm not well enough informed to even ask intelligent questions.
Thank you all for you kind thoughts and offers of support. It means a lot to me,
Best regards,
Janeb

MAI falls under the term Nontubercule Mycobacterium.  It is too bad your MD did not explain it. MAI is contracted from the environment. There are several types

and a culture should be sent to identify the species and if there is any resistance to Azithromycin.  The treatment is triple antibiotics that are taken for usually over a year (given 3 times a week). The reason they don’t just prescribe is that many people

do not tolerate the therapy so they wait until the person is symptomatic.  (that does seem odd doesn’t it).  I also worry about what the MAI is doing down there from day to day.   There are allot of resources. The best thing to do is start reading about it

and make a list of questions for your MD.. I hope you are seeing a Pulmonolgist and or Infectious Disease MD.

I keep hoping new research will find new and better treatment because this is getting to be found more often.  It is sad to say, but if more people were found

to have this and it was reportable to the CDC, maybe there would be more of a push to develop and trial more treatments.  For something to get into research, it likely has to be profitable to the drug companies if they needed to develop an new antibiotic.

So lets hope some of our other researchers are picking up the ball and running with it.

JO Ann K

@jkiemen Hi Jo Ann, I think patients not being able to tolerate the triple antibiotics is only one of the reasons that these drugs are not automatically prescribed. For one thing, there is no guarantee these drugs will work 100% of the time for everybody. In the meantime, they could have negative effects on other organs such as liver and kidney, and possible eyes, when used long-term. For many people with MAC/MAI, the cons outweigh the pros. I was give the option to go on the drug treatment or not. I chose not to and my doctor did agree with me because I'm generally healthy and can live a normal life without decreased lung function. At this point, there is no reason for me to go on the drug treatment and risk damage to my other organs. But things could change and the decision could be reversed if my condition worsens to the point where without the drug treatment my quality of life would be negatively affected, or if my life is on the line.