Mac + lung cavity

@bevmac What wonderful news! Does that mean you are able to stop the antibiotics? If so, has any strategy been devised to help keep the MAC at bay, like saline nebs and/or lung clearance?
Sue

Sue, its so good to hear from you a 'good new'. I have two pulmys one who is far less experienced with mac than Dr Landa my other pulmy. THe reason for the decline is simply because of the difficulties of staying on it. I actually have a new growth (the hope its a mucous plug) only Im not feeling hopeful. Im scared. Im scared it would mean another biopsy to make sure its mac an not something else. This is why I wonder to get a work up at the Jewish Federation.
I hope i can in a way so to be completley thorough. And I tend to get respiratory infections in the fall and winter so I may decide to do what you brought to my attention and go off them til the Fall only I need to check with my doc The body does and can become resistanct and inconsistency off/on with the big 3 is not the way to go. So lots of decisions to make.
I think your very strong dealing with the pain and I hope the tinnitus has lessened or lesseneds in time. I hope to hear back soon,
Thankyou so much,
Deb

@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo, if only to confirm that your (more MAC savvy) doc is on the right track.

After 18 months on the 3 antibiotics, 6 months daily, my body was in full rebellion. So last December, with my ID doc & pulmo, consulting with NJH, we decided to stop & see, only using Flovent, 7% saline 1X day & airway clearance. So far, so good. Made it through winter, when I usually get bronchitis &/or pneumonia, and through 2 major allergy seasons, TX & MN, without any illness and minimal need for levalbuterol nebs. Lung scan will be repeated in Dec, sooner if I get symptoms.

I have recovered most of my energy, though none of the weight I lost, and still have no appetite, so must be vigilant about eating enough. As for using the Big 3 to prevent, that will not be something I choose to do - I was too tired and sick from the meds. It will be caution & watching - my docs are happy with that strategy, even though we all think treatment will have to happen again at some point. I get the feeling that is becoming a more prevailing philosophy with MAC, since no matter how long we stay on the meds, it seems we are never really "cured", but always at risk for recurrence. Maybe by the time I need treatment again there will be something better?

Can you produce a sputum sample, either on your own or using saline nebs, so you can avoid a biopsy? So much easier on the body.
Sue

Hi bevmac, I’ve been a “no oil vegan” for 10+ years. I’m curious about what your doc’s thoughts are on diet if you

know and don’t mind sharing. Don

Hi thumper guy - My lung specialist was straight down the line with antibiotics. My alternative doc gave me supplemeents which she gets from New Zealand probiotics the days I am not taking antibiotics, and several hi quality others. I have used oil, and even though the main eating plan is vegan, she recommended salmon/seafood 70 grams 3 times per week and up to 100 grams, and two eggs, the rest is mostly plant based, which I have been experimenting with, some fails (taste) and others work. Salads, root veggies, lots of berries and nuts, almond milk (formerly loved dairy). I have only been on that style of eating for 9 months. The cavity had diminished by 3/4 8 months back, but closed over 4 weeks back. Also doing a fair bit of Spiritual reading and audio. on youtube.

I stop the antibiotics early August, and do not see my lung specialist again until November, so time will tell what happens then. Will stay plant based, with minimum 200 grams seafood per week, plus 2 eggs outside the plant based guidelines.

I pretty ignorant about “cavities”
Tell me about them

online to stop on 4/8. Visit lung specialist again November to see how I'm going - not sure about the mycobacteria. For what it is worth, my coughing stopped 16 months ago after being advised by preventive medicine doc to drink celery juice. After 12 months of coughing, the cough stopped 3 days after drinking the celery juice. I still take it, however with apple beetroot ginger and little garlic. More palatable.

can't tell you much except it looked like a black hole, best look up lung cavity on the net.

stopping 4/8. Check again in November to see how I am going. I feel sure giving up dairy, reducing protein, moderate plant based eating and celery juice as well as the meds. 17 months down and 1month to go. No eye issues with the medication. I am retired so can live the easy relaxed life. I'm 77. A young 77.