Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (40)

Fri, May 1 6:29am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@irene…..I had the high test…strongest flu shot available…..didn’t know I could get another shot……my doctor said that there are so many strains of flu out there and that each year they try to concoct the best vaccine based on what strain they think is most prevalent that year. They are doing what they say is the best to protect us but right now that protection is only 50%…better than nothing but not the best odds. . Let’s hope this new research energy and drive to find a vaccine for Covid will spill over into improved flu immunity….as we know more people the get the flu than Covid.


Thu, Apr 30 2:36pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October…got the flu in March….was told later that the flu shot is only 50% prevention effective

Thu, Apr 30 11:02am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@laura34. I was on the big 3 for 18 months ending in October. I have had slight burning sensation in different parts of my lungs off and on since then but have been healthy otherwise EXCEPT for a bad case of Inflenza A from March 1 to April 15….I tested positive for flu, not yet tested for Covid. This was the worse flu I have ever had. Has anyone on this forum had the flu this year? We simply shouldn’t get sick as it was really hard to get it out of my lungs…..and I was weakened beyond belief…muscularly and heavy coughing….bringing up tons of mucus.

Aug 23, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

I believe I will be on Arikayce until the end of this year. I still have a 2cm abcess we are hoping will shrink. Feeling better though as I continue big 3 for over a year now. Would love to know if Arikayce destroyed anyone else’s abscess or cavities.

Jul 6, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

@rits….don’t worry about Arikayce……I’ve been taking it daily since November 12 along with the big 3 and no adverse side effects….a slight sore throat at first but this delivery system is so much better for us than other forms of amikacin…..I had been receiving amikacin through an IV before I started Arikayce and that did make me dizzy….and weak. I thank God I don’t need to have that drug in my bloodstream anymore.


Your stepmother is not alone experiencing mental and emotional shifts on these drugs. Mental fog,anxiety getting upset and very sad were a way of life for me the first 6 months…..I hated the way I felt and knew it was the drugs but that was little solace. Eventually my body got used to these chemicals and I regained my composure, peace, and normal personality…I don’t think you can overestimate the havoc these drugs have on us….they are administered to attack the MAC but a side affect is damage to the parts of our brains which control our wellbeing. Arikayce is a new drug which may help as it does not enter the blood stream but goes straight to the lungs….you might look into to that for your step mother. Good luck. She is very lucky to have such a concerned stepdaughter.

Apr 4, 2019 · newcomer in MAC & Bronchiectasis

This is a great question. And a confusing one. From what I understand MAC can be culture converted which means sputum shows no signs of infection…this is the goal of the antibiotics….but I’m hearing that MAC most often returns and requires retreatment…and since the antibiotic treatment period is normally 18 or more months longer…it seems incurable. The problem often is underlying Bronchiectasis, a breeding ground for MAC, which is a lifelong condition.


@windwalker …I respectfully disagree with your statement “once you have Bronchiectasis there is no going off antibiotics”. Although Bronchiectasis is a lifelong condition….many people with Bronchiectasis live healthy antibiotic free lives. Bronchiectasis is not an infection and if it is treated as one your body will become immune to the antibiotics and result in ineffective applications for later infections……. . In addition antibiotics wrack havoc with your entire body killing off important life giving cells in your eyes, ears, brain, and digestive system…virtually every organ in your body. It’s bad enough we have to endure the side effects of 18-24 month MAC antibiotic regimens…..we don’t need to suggest people take antibiotics indefinitely. Life long antibiotic use for those void of infections in the opinion of most physicians does more harm than good.