Diagnosed with MAC but not being treated

@janovr I believe locale has a lot to do with how sick people become with mac and pseudomonas. Whenever I am in the state of Virginia for too long, I get re-infected with either mac or pseudomonas. 'Too long' for me in that state is like three months. Now, I take shorter visits up there. I wouldn't go at all except that ALL of my family is there, including my one and only daughter. I believe it could be due to the dampness there. That makes for more molds and god knows what under the rotting leaves. I now live in South Carolina near the shore. The ground is dry 20 minutes after it rains because it drains quickly through the sandy soil. I have done so much better health wise since I moved here. (that, and going to Mayo Clinic).

wildwalker…… I believe you are on Mayo's program of tobramycin and last week I visited Mayo's in Rochester because they wanted to test me to see I could tolerate it. I did fine with the test and my program is 30 days on (twice daily) and then 30 off. Doctor says if I have flares during the off time he will most likely do two weeks on ///// two off. My sputum testing has been coming back pseudomonas. Also, while there, they did sinus surgery and are hoping they got rid of some of the infection being harbored there. My question is: Do you remember how long it was before you notice good results from toby? I've been on it six days and I don't think the coughing has gotten any better yet. As an added note...…. I remember some talking about the expense of this antibiotic and I purchased mine at the Mayo pharmacy and my Medicare paid all of it. Just thought someone might want to know.

@heathert Mine come and go also, since my first CT scan in 2013 before I had been diagnosed with MAC and bronchiectasis. The term they’ve used is waxing and waning. (Lol, like the moon)

@auntnanny Hi Jan! I am so glad that you could tolerate the toby. Any time I go on it, things get worse, then turn around to great by the end of the 28 day run on it. The very first time I went on it I had had a severe cough for years. I was over the cough by the end of my 28 day run; that was in 2016. I have been cough free ever since. My first experience with toby started out with sore throat, raspy voice, increased coughing, wetter lungs. I thought it was making me worse. My dr assured me that it would improve. After two 1/2 weeks, the raspy voice went away as did the sore throat. I still coughed and had increased sputem. But then, by the end of the 28 days, it was like a miracle happened. The persistant cough of years was gone, and my lungs cleared up. I felt better than I had in years. I hope that it works as well for you as it did for me. It may feel rough at first, but hang in there and let it do it's job. On the 'off' month, I take a ten day run of cipro. That is to stave off any other opportunistic bugs and keep me infection free. So far, so good, infection-wise anyway. I still have damaged lungs, COPD, and bad shortness of breath. I just keep rockin & rollin'. Will you please check back with me and let me know how that toby does for you after the 28 day run? Hugs!

windwalker Yes, I will and thank you for your info. I've taken it a week today but am not feeling the cough is any better so I'm encouraged by your words

windwalker --- I have another question. Mayo's said I needed a different tubing/nebulizer part for the toby and they gave me one. However, it certainly is slower delivering the product that the one I use for albuterol and saline. Do you have a different type mouthpiece from the one you have used for albuterol? I fail to see why this is any better but certainly I'm not going to question what they say. Would surely like to cut down that delivery time. I'm a full hour or a little more with albuterol, saline, and then toby. Is this your experience?

@ginak I was diagnosed in 2014, close to you. Does your dr say if it is the MAC MAI that causes them the nodules that come and go

@heathert My first pulmonologist never gave any reason for it when I asked. I guess she didn’t really know. Before I was diagnosed in 2016, (after the lung surgery to biopsy a large nodule), that specialist said nodules are caused by aspiration from acid reflux. Due to the inflammation acid reflux causes. The pulmonary Dr I have now said the nodules MAY be caused by the MAC MAI. I really believe none of them know exactly, or maybe it’s all of the above. I have a friend who said they saw nodules in her lungs on CT scan but she was never diagnosed with any NTM, although she does have acid reflux also. I guess the NTMs are because of the bronchiectasis, which she doesn’t have. I hope someday they figure it all out so we can know exactly how we should be treated.

@ginak My dr says the same thing, doesnt really know but could be MAC MAI.My next scan is in a few weeks, will they have gone, who knows.

Fingers crossed for you.