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Mon, Mar 4 12:33am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Fri, Feb 8 12:03am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@pfists @america Yes the research literature on environmental sources of MAC etc show some animals and birds can be vectors carrying the disease — but this is UNCOMMON. It is much more likely that we got our MAC, MAI, Abscessus from breathing in steamy water from showers, or from tap water or potting mix, sphagnum moss or other soil — wet or dry, and occasionally from house dust. But it is a lot less common to get it from animals or birds and the animal often shows signs of sickness.
So love the bird — it is most likely to be fine — but with normal hand washing and maybe don't kiss it.
Hugs from Annie

Tue, Feb 5 5:11am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@bevmac Yes, positive thinking and determination do definitely help.
The Big 3 drugs can be brutal for some. But for many the side effects are not too bad. (I expected a bit of a battle to fight this thing! LOL).
The decision to give the drugs a go is yours. But with lung cavities, it's getting a bit more more important to at least try them for a few months if you can. You might have some (smaller) side effects that everyone gets from the disease as well as from the drugs. And I've found that many things that were a problem in the first month or two start to settle down a bit more after a while and you can live with them. Having periodic eyesight checks, liver function tests and hearing tests helps to monitor things.
My lung doctor specialises in NTMs. She gets me to take the drugs in stages in the evening, so I watch TV or sleep through most of the side effects. For example: 6pm Rifampicin, 8pm Ethambutol with my evening meal, and 10pm Azithromycin just before bed. She also recommends taking a good probiotic every morning with a prebiotic (Inulin) as well. So far that's really helped with gut issues and prevented diarrhea. I also take Vitamin D and frequently inhale pure Tea Tree Oil (Melaleuca essential oil) — the research supports using these things to fight mycobacteria.
I'm in Australia too — Brisbane. But no matter what country we live in, you've come to the right place. This forum site is the best because the people are so nice and helpful and responsive.
Lots of luck and courage to you

Fri, Jan 18 11:32pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sueinmn Thanks so much for replying Sue, your advice was very helpful to me. I hope you can get your weight under control very soon. Yes agree with others — have read in research literature that when the fight against the bugs succeeds, symptoms like the weight loss will slow or stop. My weight loss has been much smaller so far, but when I had a bad illness when young a specialist put me on glasses of sweetened condensed milk, or powdered milk with sugar, every day to help avoid losing too much weight. Healthier versions of this might use full cream milk topped up with cream and sweetened. And have plenty of honey every day. (Honey was historically used for lessening TB symptoms. You could also add a good Probiotic powder to the milk – that can help reduce the gut effects of taking antibiotics if you have it 12 hours before or after them).

Sat, Jan 12 12:42am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen Thanks for replying. Fatigue is an understatement, laugh. All the best with your scans in March Jo Ann.
I saw my doctor yesterday and my blood tests show my thyroid T4 is down — I have hashimoto's hypothyroidism. This is probably making the fatigue even worse. We're waiting 3 more weeks to do another test, then if it is still down we'll increase my usual dose of levothyroxine. It's the Rifampin/Rifadin that does this — but it can be fixed with dose adjustment of the thyroid meds. It shows how important it is to get your thyroid levels checked while on the big 3!

Thu, Jan 10 8:35am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@dglaude I started last year and was scared too about the disease and the drugs, very scared. But it is okay, please believe me Terrie. In the end, I decided to go ahead and give them a try.
Just make sure you get baseline blood tests, hearing tests and eye tests. Then have the eye tests and blood tests every month for at least the first few months to monitor how you are going.
I've had drug side effects from the Big 3, some difficult but mostly not too bad overall, and have kept changing my life around to manage them better.
We are all in this together Terrie, and as you can probably tell from the posts on this forum site, we really help each other out. Hugs to you and good luck, Annie

Thu, Jan 10 8:20am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have a quick question: Has anyone who has taken the Big 3 found their fatigue and drowsiness got even worse in the first few months on these meds? (LOL, I know – how could the fatigue get any worse than untreated acute MACMAI/Bronchiectasis?!?).
Please let me know. Did the fatigue get any better after the first few months on the Big 3?