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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers
Replies to "@skylarkny Hi, I have not posted in most likely a few years, although I have continued..."
@joanney Hi Joan. I am glad to know that you have been following this group over the years. It is good to stay in the loop to learn about new treatments, new meds, and new tips. Have you considerered the treatment plan that I was put on to clear up mac and pseudomonas? I just did post it yesterday. I had a member just post that she tried the 'Clear Lung' (that @nick52 has been praising) and that has helped to clear up her mucous. There are more treatment choices than the Big 3 out there. You just have to find the right fit.
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Hello Joanne & skylarkny - I too am an active young senior, and was recently (June 2018) diagnosed with bronchiectasis, followed by diagnoses of pseudomonas & MAC - after years of asthma, a couple years of repeated bronchitis & unrelenting cough. I too was frightened by the prospect of the "big 3" but my pulmonologist was seeing rapid degradation in my lungs, so I relented & tried it. The side effects for me are not as dire as I feared, and after several months, the cough has abated and the fatigue is less, so I think I did the right thing. I have a followup CT & sputum culture this month to track progress. My doc has been treating MAC for over 20 years, and he says in his experience, only about 25 percent of patients have major side effects from the antibiotics, and less than 10% have to quit treatment altogether. To minimize side effects, I have to take all of my meds at bedtime, and with a small snack even though they may be a little less effective that way. Taking on an empty stomach in the morning made me too miserable, and I know I could not complete the course, so this is my compromise. I also use lots of probiotics, and drink lots of ginger tea or suck on real ginger candies to ease nausea. Now if I could just get my appetite back...