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I was recently diagnosed with Bronchiectasis.
MAC & Bronchiectasis | Last Active: Nov 19 7:40pm | Replies (181)Comment receiving replies
1) Hi @gaylewroc. I was never on Amikacin. I have just been on Rifampin, Clarithromycn, and Ethambutol for almost two years without success. I forget, what was your story? Were you on Amikacin? If so, what have been your results? Has it come back?
2). Also to the group, and @katemn, Katherine mentioned taking vitamins 4 hours apart. I was told by my lung doc it didn't matter what time I took the vitamins. Does anyone else and/or Katherine have any more advice about this. I guess I am wondering if that is why my antibiotics have not worked to kill the bacteria? I would love to hear from you if you would. Thank you for any and all help!
3) To all and @katemn, what do people know about people who have been on the antibiotics without success, and then decided to stop taking them? This is one option for me, because I am seeing the Naturopathic doctor in Denver who can give me other support to hopefully heal my system. It is all a risk though. I would love to hear what people have heard about people who go off the antibiotics because they were not successful. Thank you SO much if you can give me your feedback!
Replies to "1) Hi @gaylewroc. I was never on Amikacin. I have just been on Rifampin, Clarithromycn, and..."
@beatitnow Another form of treatment is having regular brochial washes done. That is where you go in for a brochioscope and they flush some saline through your lung and suck it back out. I do know of several people that got better that way.
@beatitnow Hi! This disease is rare and there is really nothing specific to treat it. Maybe Amikacin...but it is relatively new. I have heard that most people that take the big 3 only keep the disease at bay..and after they stop it starts to progress. That has happened to me. My Doc has had me on random courses of Clarithromycin just to calm down flares. Not a good way to live.
I did research on the bacteria, and of course the bacteria is stuck in the bronchiectasis pockets. The bacteria is supposed to have a hard outer shell making it hard to get anything inside and kill it. Also, the way the bronchiectasis is spread throughout the lungs, the blood supply doesn't really get into that damaged tissue. So drugs in your bloodstream are not very effective and..the inhaled kind is not always going to get in those pockets.It's just a frustrating situation!!!! My ID doc wanted to put me on IV Amikacin but I was not happy about that at all. I'd rather at least try the inhaled kind.
As far as vitamins..some are water soluable. So your body flushes them out pretty quickly when you pee.That's probably why Katherine said to take every 4 hours. Some are fat soluable and those will stay in longer.
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@beatitnow, Hi there, just wanted to tell you that there are other treatment options out there besides the Big 3. You can click on my picture and read about my antibiotic regimen. Of course, it would depend on your suseptibility test. Plus, there are inhalables available now. Chances are, your mac has become or is resistant to your meds. Have you had a recent suseptibility test? Are you doing twice daily nebulized saline?