Radiation Lung Fibrosis, Bronchiectasis, Traction Bronchiectasis

Rochester -- but I've heard good things from the one in Florida. I think one of the mentors on this site uses Jacksonville. That would be closer for you. I do think you need to get there though. That's a mighty lot of your daylight hours and surely there is some help for that. Let us know.

@windwalker consults at Mayo Clinic Florida and may be able to provide some input, @raney.

I will have to Google that diagnosis. I did make Mayo appt today. 12/29th is earliest they could give me. How long did you wait? Also, was your 1st appt a consultation only? Not sure if I will b getting tests that day. Do you go to Mayo for follow up appts? Wish I could hear from someone with my particular diagnosis also. I hope you continue to stay well. Take care. Kathy

If you do some reading on other discussion in this group, you will find that many of us have found an alternative method of keeping MAC either at bay or out of our lungs. Here is the process in a nutshell:
Airway opening - either via inhaled or nebulized bronchodilator
Airway cleaning - using nebulized 7% saline solution
Airway clearance - huff coughing, a positive airway pressure device like Aerobika or Acapella, a percussion vest, or manual percussion sometimes including postural drainage
Some people use N-acetyl-cystine or glutathione, Omega-3 or other supplements
Quickly responding to the first hint of a respiratory illness, in consultation with docs
Periodic monitoring of lungs via CT and/or sputum cultures.

This is needed once or twice daily depending on the severity of one's Bronchiectasis. It sounds daunting but my regimen takes 20-30 minutes in the morning, while I read the paper and my email. I add a second session if my lungs are acting up.

7% saline is used in the neb because it has been shown to halt the growth of MAC bacteria.

This regimen has kept me completely off antibiotics for 22 months. My latest CT showed no change in my lungs since 2019.
Sue

I would recommend Mayo Clinic in Jacksonville. They are the ones that diagnosed me with MAC and bronchiectusis. I was getting sick with bronchitis and pneumonia frequently, but my Doctors in the Chicago suburbs or Naples FL never mentioned that I may have these issues. I was really shocked to find out that there was a named disease for this issue. But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good. All the pulmonologists seem to be recommending, and trained to prescribe the 3-4 antibiotics a day program for a year or 18 months. I have several good friends that have been on the program and it was not helpful to them. It doesn't get rid of any issues, you just have to keep using the drugs for the rest of your life. Other friends, have had major side effects, some not even being able to tolerate the drugs. There has to be a better solution!

Hi Sue, thanks for your lengthy reply. I also do the saline solution in the nebulizer twice a day, postural training and at times use my arobica device.
My latest CT scan showed that my nodules Have gotten a bit bigger. But the doctor has no more suggestions at this point. I don’t think that the Saline solution kills the Mac ;it just helps the cleaning process of the lungs. I tend to have exacerbations 2 to 3 times a year and he puts me on Augmentin for two weeks. I am curious which anabiotic‘s you were placed on and also I’m curious if most of us are 60 years or older. Thanks so much, Barb in San Diego😇 I was first diagnosed with Sjogren’s syndrome which makes the lungs vulnerable. And the pulmonologist said the Mac infection was caused by my dirty showerhead at home. The showerhead needs to be cleaned profusely with vinegar at least once a month.

MAC infections are "slow to grow and slow to go". 2 weeks of treatment won't do the job - the sputum culture needs to be sensitivity tested to see which antibiotics it will respond to, and treatment needs to continue 6 - 12 months after there is no more bacteria in the culture.
I was treated with Azithromycin, Ethambutol ANF Rifampin for 19 months, and yes, I am well past 60.
Sue

Hi Sue thank you for all your posts.As I started the antibiotic regimen after At least 6 years of MAC(unknown) i have begun to read the discussions on this site.It can be rewarding and confusing. What do you know about NAC and clear lung(haven’t found any up to date studies). Does anybody use them with the antibiotics?

Pal, you said “ But, I have been resisting the drug treatments because all of the antibiotics can't be doing your body any good.”
You’re wise to minimize use of antibiotics as they “take no prisoners” when turned loose in ones’ gut, killing the good along with the bad. Thing is though we occasionally find ourselves in a predicament where the “tradeoff” seems worth it.
One thing that suffers during the onslaught is one’s GUT MICROBIOTA. One thing we can do to minimize the damage is increase our intake of fermented foods which tend to be heavy with “gut-friendly” microbes.
Unpasteurized sauerkraut or Kimchi will likely do the trick. Available at the refrigerator case in “Foodie” friendly grocers…or better yet, make it yourself. Let me know if you’re ready and I will tell you how I do it. Don

Yes, I do have a bad gut. Bloating, difficulty with bowels. Never put the picture together with MAC. Guess you keep learning new things about MAC. Please give me your sauerkraut recipe. I will definitely try it. Nothing to lose.
I am just learning to use this site. I find it difficult to tie all the comments together. Just a little here and a little there.
It can be frustrating.