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

@alleycatkate @ginak I am currently on a yearly CT scan schedule, but if no change may extend that time frame. A chest Xray puts out a lot less radiation, but it will probably only show an advanced case of Bronchiectasis/MAC. The chest CTs are really necessary to monitor nodular Bronchiectasis (&MAC). The "low dose CT scans" are used primarily as screening for lung cancer and not as diagnostic as a regular chest CT. There is a chart that compares amounts of radiation for each procedure in this article https://www.health.harvard.edu/cancer/radiation-risk-from-medical-imaging I am not happy about the amount of radiation, but it is a necessary evil IMHO. Bill

I didn’t know they had low dose ct scans good to know

@irene5 Irene...I immediately went to my mother's Irish phrases for P & M. Haha. Pardon!

I have been having Ct-Scans about once a year or 6 months if necessary. I have never been able to cough up anything, dry as a bone. I tried Arikayce and had a bad reaction to it, so I am back on the Big 3. Have both Bronchiectasis and nodular MAC, will be 3 years in September.

@poodledoc Thank you, Bill! That is an excellent article on radiation. Good to know also that the xray does not show enough definition. Your thought on possibly extending the time frame between scans sounds good to me.

Correct @anniepie, I was on the big 3 antibiotics along with the Aricayce, Never just the Aricayce.

I was diagnosed with bronchiectasis in 2018 and MAC in October 2020. I started on Rifampin, Azithromycin and Ethambutol in October. By the end of November I noticed staining along the gum line and between my teeth, but I also noticed that my gums were receding. (I had just been to my dentist right before I started on the antibiotics and my teeth and gums were fine.) My dentist gave me some things to do to help with the staining, which he said was bacteria, and your gums don't like bacteria, and that was why they were receding. I tried everything the dentist suggested for a month, but nothing helped. I finally told my pulmonary doctor that I had to quit taking the Rifampin (since staining the teeth is one of the side effects.) It has now been over a month since I stopped the Rifampin and am just taking the Azithromycin and Ethambutolj. However, my gums still seem to be getting worse. Has anyone had a problem with their gums while on these drugs?

Hello - I took Rifampin for over 18 months, and found it difficult to tolerate, as do quite a few people in this group. Aside from a little staining, it had no effect on my gums. The discoloration took nearly a year to go away.
But, I did look it up here: https://www.mayoclinic.org/drugs-supplements/rifampin-oral-route/side-effects/drg-20065839?p=1
Bleeding gums are considered serious enough to bring to the attention of your doctor, and it sounds like you did that. There is also a VERY long list of meds which can interact badly with Rifampin, so if you are/were using them, it could have had an extra impact. If the gum recession progresses now that you are off Rifampin, or you are very concerned, you could consult a periodontist.
It would be great if you let us know what you learn.
Sue

@windwalker @sueinmn @boomerexpert @heathert @alleycatkate @thumperguy et al, thought I would I share this article that my functional medicine doctor sent me. It refers to COPD but it's still always promising to hear anything positive about a new possible treatment for the lungs.

- NIH study shows hyaluronan is effective in treating chronic lung disease https://www.nih.gov/news-events/news-releases/nih-study-shows-hyaluronan-effective-treating-chronic-lung-disease

@nannette that is wonderful and interesting news, always great to know they are working on lung treatments, very promising. Science is always so interesting.Thanks Nannette 🙂 Take care Heather