Hello everyone! What's new with you?

Thanks I will talk to my specialist in Kelowna.

Hi, I had Mac for at least 15 years , it waxed and waned with a dry cough. I have some bronchiectasis ( not a lot) and scarring from pneumonia. I had a bronchoscopy, sputum test and biopsy in 2018 that showed MAC. I've gone on saline and things look better now on the CT scans, some of the small nodules have gone away, but a year ago I got a whole new type of lung discomfort that persists through today. -- Following the flu in January 2020, I developed a very productive cough (as compared to the dry cough of preceding decades), which has persisted since then (over a year now). It gets very intense at bedtime when I lie down, sometimes after I eat, I have post nasal drip (never had it before) at night when I'm lying down, my eyes run when I wake up. I cough so hard sometimes in daytime that I vomit or pee on myself (embarrassing and gross), have big spasms.. These are very different symptoms from previous 15 years. But, my CT scans in April 2020 and March 2021 look very good compared to previous years. My PFTs are not quite so good this year, but I am almost 71 and have some lung scarring. Last week my lungs hurt so much and I was coughing so much, I took a Z pac--azithromycin, and I felt much better, which is now wearing off. I think it was due to anti-inflammatory effect of the drug, not the antibacterial qualities, but it is one of the drugs Im susceptible to according to sputum tests os I dont want to "waste" it. I had one doc tell me I had GERD-- but I had an upper GI endoscopy and GI doc said she didn't see signs of it. . My new pulmo offered to put me on a "maintenance dose" three times a week of azithromycin to calm down my lungs. I fell so much better after taking the Z=pac Im tempted. Not sure what to do. Any ideas out there re "maintenance" on Azithromycin? I know they give it to COPD patients for its anti-inflammatory effects. I've had lot of fear and caution put in me re taking these drugs and then if MAC gets worst I won't have anything to cure it,

@garry you might be interested in this discussion about Arikayce.
- Mac question: Arikayce Inhaler Antibiotic https://connect.mayoclinic.org/discussion/mac-question-1/

@windwalker!!! Welcome back. You've been missed. I'm glad to hear that you beat the infection. I don't know how you keep up with all the renos. Yay on getting the vaccine. You asked what's new with everyone. Well my new things relate to new things in the Mayo Clinic Connect community that will interest you and everyone else (in case you missed it).

1. Mayo Clinic Connect now has over 100,000 members
- 100K+ Members helping members improve their health https://connect.mayoclinic.org/page/about-connect/newsfeed-post/100k-members-helping-members-improve-their-health/

2. Members can now converse in Spanish and English together, allowing to cross-lingual conversations. I hope we will welcome more Spanish speakers into the community
- Traducción automática entre español e inglés / Automatic translation Spanish and English https://connect.mayoclinic.org/page/about-connect/newsfeed-post/nueva-funcin-traduccin-automtica-entre-espaol-e-ingls-new-feature-automatic-translation-between-spanish-and-english/

3. COVID podcasts with Mayo Clinic's infectious diseases expert, Dr. Gregory Poland. Along with the COVID group, be sure to catch the podcasts answering your COVID questions.
- Podcasts on Mayo Clinic Connect https://connect.mayoclinic.org/page/podcasts/

Teri, Bet you’re thrilled with your new “awesome” home interior. And happy to learn that you’ll soon join the “Shots-a-Pair” club, but don’t hide your mask(s) away in the attic. Don

Hi Gary, you may want to also ask your dr about nebulized tobramycin as well. Sometimes these meds need a recommendation by your dr to your insurance company to get them ok'd. They are very expensive medications and insurance companies don't like to cough up the $$ for them. However, if your dr insists that is your only option, then it usual gets accepted. If your dr is not willing to go to bat for you, then perhaps you need to find one that will. Best of luck to you.

Granny Goddard, I am glad that you are aware of the possibility of developing a drug resistance. Mayo Clinic's protocol has been to only use azithromycin as a last resort. (The back-up plan) I was put on doxycycline and ciprofloxacin on alternating months for several yrs. That worked for me and mitigated the mac. Then was put on cipro and tobramycin on alternating months for several yrs to keep mac and pseudomonas away. So far, so good. Do you know what your suseptibility tests reveal about the meds I just mentioned? Could these be possibilities for you?

how do we know if our pseudomonas is gone - I did 10 days of cipro and he said he would not retest .. ??

Azithromycin has anti-inflammatory properties as well as antibacterial. The doc thought the success was because of the anti-inflammatory effect --I called outside expert and they said same thing. in 5 days I felt so much better, cough went back to normal range. -- I had susceptibility tests a couple years ago, when I had positive MAC culture-- I cut and pasted this from the report, but the lines went nuts when I tried to copy it, so I hope I put TS and TR in right place. I hope I didnt screw it up. However, since then Ie had a negative test-- which I need to get repeated.
1_Rifampin (RIF) <=0.5 TS
2_Ethambutol (EMB) S TI
3_EMB/RIF Combo Effect SYN D1
4_Rifampin (Combo Assay) 5_Ethambutol (Combo Assay) <=0.12 TS
5. Ethambutol. Combo Assay <=1.25. TS
Amikacin. 16 TR
Ciprofloxacin. 8 TR
Clarithromycin. 0.25 TS
Clofazimine <=0.12 TS D2
Linezolid. 8 TS
Moxifloxacin. 2 TI
Rifabutin. <=0.25 TS
Streptomycin. 32. TR.

No I do not. Were do u get a susepibility test? i wrote them down to tell my Dr. I am sure the azithromycin is not working . He has me on 100 mg doxycycline right now it's not loosing anything up either. i get sick of all these anitbotics in my body. My mind gets cloudy . Memory is gone.

Hi all, I have had MAC on and off for around 6 years. I have had a return of MACMAI so am on the big three again, not sure that they are doing anything much (like last time) so may have to go onto something else in a month or two, windwalkers tobramycin sounds great, I will ask my Dr about it again. Last time she mentioned it had side effects, have you had any side effects Terri @windwalker ,I feel she may be talking about pills not nebulised, Arikayce is not funded here unfortunately not sure about toby. Take care Heather