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4 days ago · (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 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 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.

Dec 12, 2018 · Extreme fatigue in MAC & Bronchiectasis

@windwalker ….I enjoy reading your comments about fatigue and this relentless disease. However I was surprised to see you suggesting a CT every 2-5 years……I understand you shouldn’t be exposed to too much radiation but to check the progression of this disease or hopefully to get encouraging news that the disease is receding wouldn’t you suggest biannual CT scans?

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@summer 33….I know how you feel. I too was very active and very healthy before my MAC diagnosis. I’ve had Bronchiectasis for years but it wasn’t a problem except that I got sick with a bad chest cold every three or four years….but I always got better and felt fine. Being treated for MAC is really challenging as it zaps your energy. When were you diagnosed with MAC?

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@summer33….it will take many months to judge the efficacy of Arikayce. I’m not feeling good but that could be the big 3 I am taking daily too or the bronchiectusis or MAC. How are U?

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

@debminuet I have been taking the big 3 daily since July. I’m also taking Arikayce daily. They are all a worry. But……so is the infection. My infectious disease doctor told me that if you were to give these drugs to a well person they would be very sick……so my question to him was…..if we are getting well and feel bad…..shouldn’t we stop the drugs because we are more well than sick and the drugs are making us feel lousy. His answer to me was no…..the biggest mistake is getting off the drugs too early…..MAC must be completely irradiated before the drugs are stopped….that’s why they have us on them 6 months after we have a negative sputum culture.