Rits. Nurse told me 3rd to 10th day are the critical times for reactions. The 2nd day I needed to go to the dentist first thing in the morning, since I broke one of my molars eating nuts in my cereal!!
My coughing lessened up in August after 20 days on keflex and has not returned to the previous degree. I only work part time 3 to 4 days a week and go in at 10 am.

@rits Hi Rita! I will be praying that you come back from your dr appt with a good report. I have had the pseudomonas before, it was a real drag. Klebsiella is typically a hospital borne bacteria; do you know where you might have picked that up? Please keep me posted on how you are doing.

@beatitnow Hi there. Bear in mind that mac is rarely beaten permanently, especially if you have bronchiectasis. Drugs do not cure bronchiectasis, or other circumstances behind why we get mac. Chances are that you may need low dose maintenance antibiotics for many years to keep the mac away once it appears gone. This disease and infection is very complex; that is why drs tend to try diff ways to treat it, and honestly, most don't even really know how to treat it. I think that they have that 'throw enough mud on the wall something will stick' mindset. On the brighter side, meds have come a long ways and getting approved quicker. Education on this topic is becoming more universal. And research is amping up.

Hi Terri, Yes, I picked up the bacteria in the hospital. Last December, a sore throat turned into an exacerbation of my lung diseases and, when I couldn't get off the chair due to the inability to breathe, I called 911 and was in the hospital for 17 days. I've had a lot of serious medical problems requiring hospitalization over the years, but nothing like this! I reported my November 2018 MAC dx and their testing showed no other bacteria, just a rhinovirus. In May, a few pseudomonas appeared and in June the klebsiella, many pseudomonas and a fungus showed up. Very frustrating!

Hi again Terry! Despite being a germophobe (we probably all are now), I picked up a virus and am waiting to hear from my dr about whether I should come in tomorrow. I apparently have NO resistance.

I'm so sorry that you have been dealing with these horrible bugs for so long. I'm glad you have found a protocol to keep it all under control. While discussing snorkeling, you said you have low lung function. Is that from fighting the bacteria, bronchiectasis or some other condition? I apologize if I am being too inquisitive. Rita

Rits and sandykayhud. I have been 11 days on Arikayce and so far so good. My voice got a little squeaky one day but that’s it so far. I think it’ll be okay!! I use it in the morning, gargle with hot salt water right after and then eat breakfast. I think that helps to clear the throat. I will continue to post as I progress.

Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know what would happen if you stop the antibiotics all together and eat right and exercise? Do you think it can stay under control?

What are the results of your most recent sputum cultures and CT scans? Do you do any nebs or use a flutter device to keep your lungs clear? Have you talked to your pulmonologist or infectious disease doc? Everyone has a different experience with MAC and bronchiectasis.
In my case, even though the antibiotics (daily) have not eradicated the infection, I persist because the most recent CT shows still-growing pockets of infection and the cultures keep growing the bug. I don't ever want to feel as sick as I was when I started treatment in June 2018. We will be revisiting the issue after my next CT in December, considering cutting back to 3x/wk for 6-9 months if the scan looks better and my cultures are clean.
Other people here will have different stories for you. You will need to base your decision on your health, whether you still have actve MAC, other conditions you have – I recommend you talk with your doc before you make any changes.

Knowing that tri-therapy is efective in less than 50% mainly because of adverse effects, anyone only trying liposomal amykacin

Hi @2019mc, you may have noticed I moved your post to this existing discussion on Arikayce so you can see what others have said about using this medication. Simply click VIEW AND REPLY in your email notification to get to your post.

@sounder27 @rits and @sueinmn may be able to share their experiences and knowledge about the arikayce.

Back to you @2019mc are you currently considering taking arikayce or will you be starting it soon?

@beatitnow, Hi Amy! I haven't heard from you in awhile. How are you doing? Did you start on the Arikayce? If so, how is that working out for you? Or did you decide to forego meds altogether? I hope you are doing ok!