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Fri, Aug 23 3:10pm · 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.

Sat, Jul 6 9:14pm · 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.

Tue, Jun 18 7:10am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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.

Thu, Apr 4 12:44pm · 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.

Wed, Jan 16 4:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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.

Dec 23, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@Havah and Onana…..Probiotics help intestinal problems but there are so many other side effects resulting from taking the big three every day as I do. I am on a high daily dosage and although the doctors are concerned about losing sight and hearing……one thing most doctors don’t prepare you for is the huge changes in your mental and emotional well being. These drugs affect every part of your brain, attacking emotion and cognitive centers as well as more obvious physical ones. It goes beyond just not feeling yourself all the way to feeling like you are inhabited by the devil. Everything looks bleak, Hope is lost. You rant, you cry. It is simply horrible. You feel completely miserable. It doesn’t last all day thank God but you can’t predict when it will come on or how long it will last. Ive been on these drugs for 6 months plus Arikayce since October and there hasn’t been a day since that I have not broken down sobbing in tears. This is not like me…in fact I haven’t felt like me since last May. I’m pretty miserable. And I am looking forward to the day I don’t have to take them.Anyone else find these drugs emotionally denilitating?

Dec 12, 2018 · Extreme fatigue with MAC in MAC & Bronchiectasis

@windwalker …thank you for your reply…makes a lot of sense….I have Bronchiectasis too so I understand I will be dealing with repeated bouts of MAC….and repeated exposure to drugs to kill it. Do you currently have positive MAC cultures? If not what drugs are you taking to treat the Bronchiectasis? And aren’t you concerned about the damage to our bodies with all of these ,one term antibiotics?

Dec 12, 2018 · Extreme fatigue with MAC in MAC & Bronchiectasis

You are right in essence. I don’t know of a single person who has been infected who got rid of it for the rest of their lives. I beg someone to please prove me wrong on this…it can go away for awhile…meaning you can receive negative sputum cultures for a few years but everyone I have spoken with has been reinfected later. How I wish I were wrong! If anyone knows of anyone who has received treatment and went on to live 20 more years without a reoccurrence please chime in.