Mac + lung cavity

Thank you for the info on albuterol - it gives me the jitters. I’m using the 7% in my neb and drink a lot of water when I do - my problem IS how long it takes me to start coughing, other than a little while on the neb. I lay down afterwards for as long as a half hour and quite often won’t cough up much. I get up and go about my day and maybe 15 or 20 minutes later I’ll have much more. Doc doesn’t know so maybe it’s normal. Just wonder if anyone else has a similar problem. I’m off meds except for azithromycin 3 times a week maintenance. I’m also 84 and have been battling this since ‘03. Marilyn😷

Wow, Marilyn! That is a long time to be battling this crud! God bless you. Have you tested positive for all of those years? Changing the subject here: I think that even if the saline doesn't cause you to cough up phlegm, it is still doing you good by thinning the mucous, and also making a salty inhospitable environment for mac to grow. I am finishing up my saline treatment right now even as we speak. It did make me cough, and it will cause the junk in my lungs to come up for the next hour. If the albuterol jitters get to you too bad; remember to ask for levalbuterol instead. Big hug to you!

I did get the levalbuteral and it helps with the jitters. I have been battling most of my lung problems since 03. My biggest problems are the Mac, has been in remission for a few months, Nocardia in remission for almost a year. Have had other infections off and on and treated with cipro or amoxicillin. Have a couple samples in now and waiting to see what’s up as my mucus is a yellowish/sand color - I do have a cystic fibrosis gene which they tell me makes me more susceptible to these lesser bugs. BUT, I’m very blessed in that I feel so good and I’m active. I walk 7,000 steps a day and find that makes a big difference in my life especially since I’m struggling right now to keep my oxygen at 94. Hopefully lab results show up soon. Thank you for writing to me - you’re very encouraging. Thank goodness I read about saline here as my Docs had never suggested it. 😊🙏

My Dr.s do not want to treat the MAC. They say it's very hard to get rid of and the antibiotics would be very hard on me. But when I have a flare-up I feel pretty bad, go on Augmentin or something like it. I feel better for a while but it always comes back. Do you think a trip to Mayo Clinic would help me or be worth the try? At this point, I am not sure. Thank you for reading, hope to hear back from you, Jan

Jan, I don't have MAC; I have a different bacterial infection. That being said, I do recommend the Mayo Clinic. After a year of unsuccessful efforts by other doctors to correctly diagnose and treat my condition, that all changed when I was able to see both a pulmonary specialist and an infectious disease specialist at Mayo. Still working on my condition -- I'm miserable at times -- but at least I feel I'm on the right track.

I would be on the phone immediately to contact Mayo or National Jewish for an appt. Your doctor is correct, MAC is hard to get rid of and yes the antibiotic can be very hard on you. That said, it took me over a year of going to different doctors (primary, GI, ENT and local pulmonary doc) and even paying out of pocket to get a CT of my chest to see what was going on in my body. The pulmonary doc did a bronchoscopy and I got the diagnosis of bronchiectasis, MAC and Pseudomonas. He hit me with the 3 heavy antibiotics and I felt I was slowly dying. I found this group and a member sent me the name and info on a doctor 3 1/2 hrs away. I contacted his office and with was able to get an appt. within a couple of weeks. My next option would have been Mayo--either Rochester, MN or Jacksonville, FL. The doctor I saw finally said I probably should never have been put on medication. He also started me nebulizing--that day. I had to undergo some IV antibiotic treatment for a tough (3 strains) of Pseudomonas. It still flares it's nasty head and I'm currently positive but only one strain. I asked if I could increase my nebulizing from 3% Sodium Chloride to 7% and he accommodated my request. Currently I'm not on any medication but do nebulizing once a day. I feel well and do what I can to stay that way. Thank you God the Father.

How long have you been diagnosed? What is the qualification of your doctor--is he a specialist? I learned a long time ago that knowledge is power. Your reaching out to this group is probably the best thing you could do. Everyone here is ready and willing to help you with questions you have. Now, get busy and find your super hero doctor. They're out there.

Pray God will be with you in your endeavours.
Faye

Just curious. Do you deep breathing and huff coughs to try to bring out the mucus??

@janrn1 If you are interested in inquiring about an appointment at Mayo Clinic, you'll find more information and contact information of all 3 campuses on this webpage http://mayocl.in/1mtmR63.

If you have frequent flares I would certainly suggest a Mayo or NJH consult, whichever is more convenient for you. It is somewhat usual to not treat MAC if you are not symptomatic but that doesn't seem to describe you.
Sue

Can you tell me what NJH is? I would like to see what my options are. Thank you Sue. Did it help you to get a further evaluation for treatment?