Is there any successful story?

Arikayce seems so effective for many people. How is it that it is not given first? Maybe it's a business reason!

You are such a wonderful new addition to our group - which I always say is "full of wonderful people who would rather not be here."

When you say, "I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time)"...I hear you...In the ideal world, researchers and doctors would have all the time and money they need to devote to studying illness and disease, but we all know that doesn't happen. The real problem with the research and study of rare diseases is that dollars are scarce. Compared to Asthma & COPD, Bronchiectasis is a rare disease, and NTM/MAC is far more rare, even though it may not seem like it to us. A choice must be made in most cases between developing new knowledge and treatments and following known patients over time (in our very mobile society.)

And this analysis is right on point: "This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient." In fact, if I had not become a mentor on Connect and in this group, after I lived with my infections and Bronchiectasis, I might well be one of those who only checked in occasionally.

So you will see me say, day after day, in many of our discussions, that every person has a different experience with MAC & Bronchiectasis, different underlying conditions, and a different tolerance for risk in their lives.

Frequently I remind people in other groups, like Joint Replacement or Osteoporosis of the same thing - only (some of) those with problems come looking here for solutions. Even fewer actually post here - maybe one out of 10 members who are reading our discussion actually comment.

I try to remember to respect that aspect in our members, and try to never say "you must", or "never" or "always" and rarely say "you should"...

All that said, I feel like a success story, MAC & Pseudomonas free for over 5 years, with stable Bronchiectasis, and finally controlled Asthma - but knowing that can change at any time. I am forever grateful for all I have learned here, and for all those who have supported me, not just in this group, but the several others where I spend time.

My Dad was always fond of saying "There but for the grace of God go I" and never passed on the opportunity to help, support or cheer up someone else - family, friend or stranger - it is what the other volunteer Mentors and I try to do here each day.

You are amazing if you can run 10k miles a day! Inspiring, and that bodes well for your healthy future. I do want to add, though, that both high blood pressure and type 2 diabetes CAN and ARE routinely reversed with lifestyle changes. And who knows what other diseases that are considered “incurable” are ultimately not! Just putting out that ray of hope. A friend of mine with very high cholesterol whose doctor said he needed to go on statins immediately reversed it completely in a matter of a couple of months without the statins. His doc was dumbfounded, of course, since most medical training is drug-oriented and most doctors are taught little about the healing possibilities of diet and other common-sense strategies. Luckily, with BE we already know that airway clearance, a lot of which is just age-old yoga postural and breathing practices, is immensely helpful, along with things like exercise and diet. And for me the best stabilizer of my mild to moderate BE, is hot water, a warm, soupy diet, followed by breathing and other exercises. So far no medication needed, and the hard knocks of bleeding episodes with hospitalization made it clear that those simple life habits can make all the difference and must be maintained. And to be clear, I know only too well that drugs have their place in disease treatment—antibiotics taken daily for two years saved my life from TB at age 20 and I get all vaccines and flu shots available, and go through the recommended round of antibiotics during exacerbations. I am forever grateful for these drugs, yet know that in many instances drugs are overkill, and stem from the bias of typical medical education. Learning all that I can to mitigate symptoms, worsening, with lifestyle changes is where I wish to put my attention. And even though I am no longer being able to eat ordinary meals as I was able to as recently as fifteen months—and miss that—it’s not too high a price to pay for relief from constant bouts of choking and monthly bleeds.
Wishing you all the best,

Aida

Hi bayarea. You're right about people being treated successfully then not checking back in to the MAC groups. Happened to me. I was so happy to be done with 3 solid years of treatment that I was like "I'm outta here and never want to come back!" I think I started the Mac horror show in 2016. The big 3 didn't seem to work. I was jamming those monsters down my throat for two solid years and still.... mac mac mac. So Arikayce was added to the mix. Another year went by where I was taking the big 3 and arikayce with it. I probably didn't even need those 3 dumb meds. It was the arikayce that did the trick. Anyway by the time I endured 3 years of treatment --- and when I finally got 6 months of negative cultures back I was sick to death of the whole routine so I decided to never go back to a doctor again. I'm done I don't care to even know if there's mac in there. Doesn't seem like it to me. I live alone on a little homestead in the country and I work like a 35 year old man. (I'm 71) When I'm chopping wood or cutting and stacking a field of hay with hand tools I think to myself . "I'm cured." My mind says I'm cured and I believe it.

Yes I wear a mask when I do labor that kicks up dust or other airborne particles. At first I was afraid my days of farm work were over and that was sad. But eventually I just started doing it again. But with attention paid to lung health. I keep a mask in my shirt pocket when I go outside just in case I end up doing something that kicks up the dust... like chain sawing firewood. When I remodeled an old out building and turned it into a tool shed I even bought a full faced mask with a shield and those canisters on the sides to really give me super duper protection against the fiber glass insulation I was installing. I built a woodshed. I built a composting outhouse and I built a porch for my cabin. I put the tin roofs on my cabin and on the garage and roofs on all the other outbuildings. I installed the plumbing and the electricity. I built the kitchen. I grow a garden and I forage for herbs and wild apples to feed myself year round. I do all of this myself. I'm aware that all of this makes me sound like a rugged man or something . I'm not. I'm definitely a female. I like to make and wear dresses. I also know that I am bragging. I'm bragging to show that a person can overcome illness and keep going. I survived breast cancer and the treatment of it. I survived MAC , and the treatment of it. Those things got me down.. yes they did and I battle depression but I manage to pull myself back up and keep going.

Hi Helen!
I just posted this to a lady starting treatment, I hope my success story helps you too:

I finished the big 3 in Nov 2023 and am still MAC free!! I have Bronchiectasis as well but other than a flare up of that 3-4 times a year/ I am back to living LIFE! Hubby and I just got back from 18 day hiking trip to South America!! So, wanted to start with the hope and good news!! As for meds, I took at night b4 bedtime. This seemed to lessen side effects for me. I also took a daily probiotic every morning
(At least 10 billion) because eating yogurt is just not enough with the large amount of antibiotics your body is consuming. Keep up exercise, if you can…even when you don’t feel like it. It helps!!
Best,
Dee

Hi Helen!
I just posted this to a lady starting treatment, I hope my success story helps you too:

I finished the big 3 in Nov 2023 and am still MAC free!! I have Bronchiectasis as well but other than a flare up of that 3-4 times a year/ I am back to living LIFE! Hubby and I just got back from 18 day hiking trip to South America!! So, wanted to start with the hope and good news!! As for meds, I took at night b4 bedtime. This seemed to lessen side effects for me. I also took a daily probiotic every morning
(At least 10 billion) because eating yogurt is just not enough with the large amount of antibiotics your body is consuming. Keep up exercise, if you can…even when you don’t feel like it. It helps!!
Best,
Dee

That's a great success story! Curious if you have to take your airway clearance gizmos with you when you travel (nebulizer, saline, water filtering, etc)?