(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.

sounder27 I would do it as quickly as possible. I was in bad shape when I decided I had to do something or I was going to die. I'm down on the Ks/Okla state line -- a 10-hour drive but I just called up there one day and they took me right in in 4 days. I didn't know what I had at that time. Had been misdiagnosed locally for 5-6 years. So, I actually asked for gastroenterologists because my regular care doctor thought it was reflux. It took 3 gastro guys on 2 hours to tell me it certainly wasn't reflux and that it was bronchiectasis. They said we want to get you with one of our best pulmonologists and his name is Teng Moua. It took maybe a month to see him but oh my...… such a nice, kind and compassionate man. Took all the time I needed explaining the diagnosis. I had never heart the word bronchiectasis and I asked him if I were going to die from it. He smiled..... said you will die with it..... but hopefully not from it. I think we can manage the disease. It is chronic and there is no cure. They ran sputum tests at that time and of course had results in a couple of hours. I was sent home with meds that did immediately start to help. When I would have episodes again with coughing and phlegm, I could have sputum test run locally (he would fax a prescription for it if your doctor won't write it). Then I would fax the results to him the following day and he would prescribe from that. It's an ongoing situation but I've never dreamed there would be a place like Mayo's. Truly the best. His med Secretary's number is 507 284 5398. You might simply contact her and perhaps could get you in earlier than if you go through channels. Or..... maybe there is another pulmonologist who could see you quicker. But this number is only for Dr. Moua. They have a portal to which you can keep contact with him and he responds to the notes you write on that portal if you have questions. I do not know anyone who has not been ecstatic about the doctors there and the facility. If you do decide to do this, write me again and perhaps I can help you with hotel, etc.

sounder27 I would do it as quickly as possible. I was in bad shape when I decided I had to do something or I was going to die. I'm down on the Ks/Okla state line -- a 10-hour drive but I just called up there one day and they took me right in in 4 days. I didn't know what I had at that time. Had been misdiagnosed locally for 5-6 years. So, I actually asked for gastroenterologists because my regular care doctor thought it was reflux. It took 3 gastro guys on 2 hours to tell me it certainly wasn't reflux and that it was bronchiectasis. They said we want to get you with one of our best pulmonologists and his name is Teng Moua. It took maybe a month to see him but oh my...… such a nice, kind and compassionate man. Took all the time I needed explaining the diagnosis. I had never heart the word bronchiectasis and I asked him if I were going to die from it. He smiled..... said you will die with it..... but hopefully not from it. I think we can manage the disease. It is chronic and there is no cure. They ran sputum tests at that time and of course had results in a couple of hours. I was sent home with meds that did immediately start to help. When I would have episodes again with coughing and phlegm, I could have sputum test run locally (he would fax a prescription for it if your doctor won't write it). Then I would fax the results to him the following day and he would prescribe from that. It's an ongoing situation but I've never dreamed there would be a place like Mayo's. Truly the best. His med Secretary's number is 507 284 5398. You might simply contact her and perhaps could get you in earlier than if you go through channels. Or..... maybe there is another pulmonologist who could see you quicker. But this number is only for Dr. Moua. They have a portal to which you can keep contact with him and he responds to the notes you write on that portal if you have questions. I do not know anyone who has not been ecstatic about the doctors there and the facility. If you do decide to do this, write me again and perhaps I can help you with hotel, etc.

To auntnanny. Is your pulmonologist at the Rochester Mayo?

@windwalker
@heathert
@spencersok
@jkiemen
This is the email I received from the CEO of Vast Therapeutics a few days ago.
Sounds like its going to be in clinical trials next year if all goes well.

Fingers crossed!

Shari

I appreciate you reaching out to us.

As you already understand, we are a preclinical drug company. Our clinical studies will not be for some time (more than a year away).

Further, our clinical study will be for Pseudomonas aeruginosa infections in Cystic Fibrosis patients. So I’m not sure you would qualify.

I wish you the best of luck and we will continue working hard!

John Oakley

Chief Financial Officer

Know Bio LLC / Vast Therapeutics, Inc.

joakley@vasttherapeutics.com

Yes, he is...…. I like him very much. Let me know if you are going.

@nannette I so wish you could get rid of your cough too. That constant coughing is a drag. BTW, we should get together soon.

To auntnanny. I will definitely keep in touch and keep you up to date. Thank you so very much for your encouragement. I appreciate your kindness and feel blessed to have found this forum.

sounder27 ----- have you done sputum testing? My first showed MRSA, Staph, and lots of scary sounding things. However, they were fairly easy to rid. Now I have pseudomonas and that has been more difficult. I do lots of sputum tests (take to a local lab and then fax results to Dr. Moua). Easier than driving back up there and he's perfectly happy to do that.