Should I take Big 3 + inhaled ARIKAYCE

I hear ya. A lesson to teach our children, make good decisions, work hard but play hard as well and enjoy every minute of it. No more true words have ever been spoken, we have no idea what is right around the bend of life. I am trying to stay strong but struggling right now. Had Pseudomonas 2x last year in addition to 2 bacteria and Covid. AT least I have made it for 4 months bacteria free until now. I used to go a year without picking up anything. I guess I should be grateful that I have never had to have IV therapy. Always a pill somewhere to get me out of the ditch. I will be fine. Just kinda pissed off right now.

Dear Sue, I fully agree with what you said. I believe that you are very lucky to be fully cured. I also agree that delay of medication may bring detrimental effects. But I also heard stories that people keep picking up other bacteria or has to be on med in the rest of the life. I may not be a very lucky one like you, just one of the others. What happens to those patients who can't tolerate medication. They have to stop anyways. I may sound stupid but I really don't want to regret. Thanks again for your advice.

Hug hug, I hope I can help you. Did you take probiotics everyday when you took the medication? I also sent you a message sharing my experience ， though not doctor's advice.

Yes, I take a probiotic everyday. DR said that I need it for the gut because of all the antibiotics. Just an over counter probiotic.

I also think if patients knew the damage MAC can do and hard it is to reverse that damage, they wouldn't hesitate to take the meds

The multiple antibiotics can damage the liver, kidneys, vision& hearing.
This is all monitored closely.

Yes true. I was asked to do a baseline test for ear and vision but some damage are permanent and not reversible, per my doctor.

Hey ladies/guys, did some research on Probiotics/ collagen peptide, here are a list of the best I can find from internet. Some people also mention that probiotics should be taken 4-6 hours after antibiotics were taken. Still studying the collagen peptide said help repair for leaky guts.

1) VSL # 3 medical grade probiotics - contains 8 strains of bacteria found in human gut
2) Culturelle Pro Strength Daily Probiotic - only contains one strain - Lactobacilus rhamnosus (LGG)
3) Seeds DS 01 Formulated with 24 strains (not found in yogurt, most supplements, or and beverages)
4) Live Conscious Beyond Collagen Multi Collagen Powder

You are welcomed to give the recommendation or input about probiotics you tried or felt worked very well on you. Let's do some homework together to fight for the side effects of long- term use of antibiotics!!!

Here is also a link about an Austin Functional Medicine Dietitian who worked on how to prevent antibiotics side effects. She gave a lot of recommendation on food that contain probiotics like Kimchi, bone broth, etc. Broccoli seems to be a very healthy vegetable to lung, which I hate the most 🙂

Question -
I wonder whether there is anyone in this group resistant to amikacin IV , but still take Arikayce ? In this situation, does Arikayce really help with MAC? Appreciate it if you share your experience.

I was dx with bronchiectasis and MAC 5 years ago and wasnt treated until i got pneumonia, took 10 days of antibiotics then admitted for 5 days for IV antibiotics which had no effect. An infectious disease MD said I needed to be treated for MAC.
I started on ethambutol+ Azithromycin MWF 3 weeks ago. Its no day at the beach but my chest xray is very congested. I need these antibiotics. I am 76 and in good except for gastritis and IBS.
Good luck!