(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but that it takes a few months. They recommended (to me) 4 weeks on and 4 weeks off. Then repeat for several months. Windwalker on this site has used it successfully and I'm trying. It is an inhaled antibiotic that goes directly to the lungs and I believe one bacteria it targets is pseudomonas (which I have). They asked me to use a different dispensing cup from the one that usually comes on a nebulizer. This one breaks it down into a fine mist. I believe it is available (not costly) on Amazon and I'll get the name of it if you are interested. I told Mayo Doctor I had been on this two weeks and was still coughing and he assured me that we needed to stay longer. Two weeks would not take care of it. I just hope he's right. Perhaps Windwalker will come on and help you more with this product. I believe she said after using it she was cough free for a couple of years. Sounds like heaven to me. I believe tobramycin is an older antibiotic but the new way of getting it into your lungs seems to be what they feel is so important. I hope this is helpful to you in some way. Windwalker is also with Mayos (Florida) and I'm with them in Minnesota so I believe it is what they are recommending.

auntnanny. I am going to make an appt with the Mayo in Rochester. I remember that you told me which doctors that you saw there. I will be coming from Rhode Island and will also need a hotel for my son and me. Any recommendations that you could give me regarding specialists and hotels in the area would be much appreciated. I just had a car scan yesterday and my Mac has progressed much more than was anticipated. The coughing and sleep apnea have put a great strain on my heart and afib condition. I am getting very weak and exhausted.

sounder 27 Dr. Teng Moua is my doctor there and he's very kind -- if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn -- they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And.... if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's -- the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

sounder 27 Dr. Teng Moua is my doctor there and he's very kind -- if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn -- they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And.... if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's -- the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

sounder 27 Dr. Teng Moua is my doctor there and he's very kind -- if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn -- they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And.... if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's -- the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

@auntnanny I just spoke to the intake people at Mayo in Rochester to set up an appt also. I will try the Hilton Garden Inn for a room when I go. Can you tell us how they do their consult visits. Did you have to do any tests there? How long did you have to stay?

You should call Hilton Garden Inn as soon as you know when your appt is. I would make a reservation for an extra night just in case they want you to stay over for a test. It costs nothing to cancel. Everyone at Garden Inn is there for Mayo's and they never know for sure if they need one night -- or two -- or more. They fill up fast so do make the call. If you have a current cat scan, get it put on a disk and take it with you. They might ask for another and if so, you will love the people working in that area too. So very kind. Did you get Dr. Moua -- or do you know that at this time? He will do his opinions and recommendations from the cat scan (I'm almost certain of that). I think you will just be there one night but do make a 2-night reservation -- just in case.

You should call Hilton Garden Inn as soon as you know when your appt is. I would make a reservation for an extra night just in case they want you to stay over for a test. It costs nothing to cancel. Everyone at Garden Inn is there for Mayo's and they never know for sure if they need one night -- or two -- or more. They fill up fast so do make the call. If you have a current cat scan, get it put on a disk and take it with you. They might ask for another and if so, you will love the people working in that area too. So very kind. Did you get Dr. Moua -- or do you know that at this time? He will do his opinions and recommendations from the cat scan (I'm almost certain of that). I think you will just be there one night but do make a 2-night reservation -- just in case.

auntnanny. I am going to make an appt with the Mayo in Rochester. I remember that you told me which doctors that you saw there. I will be coming from Rhode Island and will also need a hotel for my son and me. Any recommendations that you could give me regarding specialists and hotels in the area would be much appreciated. I just had a car scan yesterday and my Mac has progressed much more than was anticipated. The coughing and sleep apnea have put a great strain on my heart and afib condition. I am getting very weak and exhausted.