Anyone have cavitary MAC?

I am going back in July for another CT and to do airway and fitness testing. Thanks everyone for the sharing and advice. 🙂

Hi @bluesplashgirl, @melissa08, @maureen2022, @onana, @extracare808 and @colleenyoung

This is my first post after joining this forum last week. I am a 56 year old woman with a history of bronchiectasis. During descent on an international plane flight in early June, I had terrible chest pain and ended up in the ER. They found a 1.5 cm cavitary and sent me immediately back to US. Fortunately I live near Mayo Jax and my doctors are there. My questions for you guys are -- other than the cavity and the plane episode (which I think had to do the depressurization of the plane?) I have no symptoms: no cough, no sputum, no fatigue, weigh loss, shortness of breath, etc. I do have chest wall pain but I often get costochondritis when I have something wrong in my body. My first MAC test showed 17 colonies and my second one is pending. I am wondering does having a cavity mandate the Big 3 even though I have no other pulmonary symptoms? My Mayo doctor absolutely wants to put me on all 3 plus arikayce right off the bat if my second culture is also positive but based on some of the things I have read on this forum, it doesn't seem so clear cut to me. HAs anyone every had their cavity go away without the big 3 (I am doing 7% saline twice a day)? has anyone ever done any "watchful waiting" -- seeing if symptoms develop or getting CT scans to see if the cavity grows? Thanks for any input!!

Hi, I waited a bit and my cavity got bigger. I am 4 months on the big three - no arikayce and now my cavity is healing and smaller. I take supplements and follow whole food plant based diet, plus good probiotics. I do not nebulize. I had no symptoms at all except for some hemoptysis initially which stopped. I was worried but I personally am happy I started the big three. I think with a cavity they always recommend start treatment even if there is no symptoms.

Hello,
My cavitary lesion went away after I stopped doing the nebs of 7% saline. I replaced the nebs with. Dry salt inhaler. I have also been negative for MAC now for a few months. My doctor at Mayo in Rochester is Dr Clain. Following his instructions to continue the Big 3 and raise the head of my bed 4” may have contributed to the cavity collapsing, as well. I did go against his advice and stopped nebulizing in Nov 2021. I do not produce sputum easily and the twice daily nebs may have contributed to the cavity? Purely anecdotal but it worked for me. Good luck!

Maureen, Are you doing the dry salt inhaler?

My husband Bruce began graduated treatment with the Big 3 starting in late September 2021 plus Amikaycin delivered thru a PICC Line (catheter) in his arm. The PICC was removed after a month following noticeable hearing loss.
He moved to the Arikayce nebulizer in December. Plus he nebulizes Albuterol sulfate followed by 7% Hyper Sal twice a day.
He had one cavity when he had a CT scan in December. Six months later the June 2022 CT indicated multiple cavities.
His ID/Pulmonologist and the Radiologist At Johns Hopkins were not overly concerned with the additional cavities given the aggressive treatment he is undergoing.
Bruce is considered out of the “norm” and a tough case since, in addition to having multiple strains of MAC, he has Bronchiectasis, bouts of Pseudomonas, Barrett’s esophagus and esophagitis, spinal stenosis, GERD, debilitating shortness of breath, and generates voluminous amounts of sputum.
He’s had several negative MAC cultures interspersed with MAC positives.
Keeping his calorie levels up is tough given the antibiotic side effects of loss of appetite and weight loss.
Despite all of that Bruce is determined to get better, generally maintains his humor and a positive outlook, but most days are challenging.

Yes I used it for a bit, was interesting. I think it helped a bit in that time to cough more. I'm feeling better lately so have not used it much. Exercising alot tho which works well.

Thanks for the update! Did you do arikayce?

Hello, No I did not do arikayce. It was too risky with my hearing. I stopped using the nebulizer and switched to dry inhale salt and aerobika. I am still on Big 3 until May 2023

Has anyone had any cavities develop in their lungs? I have copd and Mac and after a recent stay in the hospital for a hip replacement I was told I have two cavities - one in each lung with one larger than the other. I haven’t been able to find out much about them or if they can be treated etc. My dr just ordered another ct scan.