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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@katemn Hello! New to the site. Just read you were on 5 antibiotics for 18 months back in 2011! What is your diagnosis since then? Are you keeping the MAC under control? I just started on the 3 antibiotics for 12 months regime currently in vogue and I hate to think this will have to be repeated every few years for the rest of my life. I am the typical NTM (nontuberculous mycobacterial lung disease) patient, having had previous pneumonias, have bronchiectesis, am over 65, a woman who lives near the coast and loves to garden - and breathe the air, darn it! Diagnosed with MAC 10 years ago but was put on only 1 antibiotic for 4 months. Since then, whenever I have a flare-up, no one until now has said go to the Infectious Disease Consultants and get on a the 3 antibiotic regime! Mayo clinic doc said if I start coughing excessively to take Levaquin. Ended up taking almost monthly! Not good idea. VISIT: ntmfacts.com They say a delay in treating with the recommended therapy could lead to severe consequences. In a study of 40 NTM patients who did not receive treatment due to minimal symptoms, 97.5% experienced disease progression over an average of 6 years! This is radical! This is what happened to me!! I was even hospitalized with double pneumonia 3 years ago and all they did was fill me with every antibiotic they could try...never setting me up for the right therapy.
Maybe my doctors thought it was just not been bad enough, but I think it's a mistake not to grab it by the horns at the outset. Many gals posting here seem to be trying everything else but. They shouldn't wait. Get your bronchoscopy!! Be patient, MAC takes min or 6 weeks to grow. My samples were sent to the National Jewish Hospital in Denver - one of the only hospitals to really specialize in the disease. Read their site also!
The regimen doesn't come without side affects:
1. Azithromycin could cause some hearing loss. Get tested at the outset to establish a base line.
2. Ethambutol could affect color vision. Get tested regularly for that too.
3. Antibiotics are known to kill all bacteria, bad and good. Vital to take a strong probiotic the night before.
4. Monitor closely - monthly cultures of sputum
5. Sign up for updates for the latest information at NTMFacts.com/Impact
I am banking on getting rid of the bacteria this year. But may take two! That's ok...don't want to cough anymore!! Good luck everyone!
Replies to "@katemn Hello! New to the site. Just read you were on 5 antibiotics for 18 months..."
@hsletter Hi Helen -- this forum site automatically goes to the OLDEST message when you sign in. To get the latest 2019 threads in this forum go to the bottom of the 2011 message from @katemn on the front page. On the left side you will see the page numbers. On the right side you will see a box with | oldest to newest | in it. Use the small down arrow in this box to select | newest to oldest | instead. The recent posts will all come up then -- your recent post along with recent messages from other people.
Good luck with your treatment. You are right, the longer people with coughing and phlegm symptoms leave this illness untreated the worse it usually gets (as that study showed -- 95% of cases!). So, in my experience anyway, it's best to get onto the treatment as early as possible. The antibiotics do have risks, and do need to be monitored, but most of the common side effects can be managed. I agree it's essential to take a strong broad spectrum probiotic every day, but to work properly it needs to be taken with high fibre powder such as Inulin powder -- you can order this online. We also need to continue with strong probiotics even after we finish the 1 or 2 years of antibiotics to help our weak immune systems. Again, all the best to you, Annie
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@hsletter Hi Helen, I just read your post. I do not post that often myself, but sadly I do know that the founder of this site, @katemn, has passed away, I think it was last year. I am one of those patients with MaIC that has known I have had it for a least 8 maybe 10 years. I have managed up till now to stay very active, have never had pneumonia, but bronchiectasis is getting worse, and I have lots of mucous production and coughing. I was due to start the big 3 mid Jan, but had to once again postpone starting because of a serious shoulder issue that my require surgery. (I have bilateral shoulder replacements and now one of them has failed and seized up, and I may reguire a revision). I just could not face going through major surgery with my system run down with 3 toxic antibiotics, and opening me up to being more susceptible to surgical infection in the joint.
I will start the journey of the big 3 as soon as I get this shoulder sorted out, because I like you are keen to try to get rid of this nasty ongoing thing. My biggest fear is the fear that the big 3 are so toxic and may not even work, and once on, we are on these and other antibiotics for life. Good luck with your journey. It seems like there are more and more of us, 65 plus females with Bronchiectasis and Maic. Keep posting, take care. Jo.