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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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I too have rheumatoid arthritis and was on Humira for 13 years. Had to stop it in 2019 when I was infected with haemophilus in my lung. Now I am infected with something else, mac so far is negative. They are still testing. I stopped the methotrexate now too. Make sure you have a pulmonologist who understands BE. No need for a visit to a special facility if you have that.
I am 70 years old and diagnosed with MAC 6 months ago. Started Azithromycin, Ethambutol and Rifampin 4 months ago. I wanted to take the antibiotics and clear out the infection, since I had pneumonia twice. It hasn't been too bad. Diarrhea in the morning, which I take psyllium seed capsules (20 throughout the day.) Please place your own needs and desires front and center during this decision.
I am 77 and was diagnosed with the same 2 years ago. I was put on the big 3 (Azithromycin, Rifampin and Ethambutol). I had the nausea, diahrea and loss of appetite but it didn't last more than a few months. I was lucky I never got fatigue. I was taken off Ethambutol because of eye problems which corrected itself after off the med for 3 months. I was put on Arikacye for 8 months buy taken off because of terrible cough and shortness of breath. They are now trying Nuzyra which I start in 2 days. Everyone is different in reactions to the medications but It is definetly worth going on the medications. I wish you the best in whatever decision you make.
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1 ReactionI travel with a drizzle pot. Foldable silicone pot with a heating element built in. Boils quickly. Super compact. Just enough capacity for pari or ombra nebulizer cup, aerobika and salbutamol puffer sleeve. Source distilled water from ship or first store you can get to. Drizzle pot comes with different plugs so works in Europe and NA. Travel with multiple sets equipment if you can. So important to keep clearing every day. Suspect your Respirologist would highly reco staying on your medication. It’s a pain but might be best for you in the long run. Sorry just replying now. I learned about drizzle pots here and have been eternally grateful for the advice. So many great tips from our community here. All the best! D
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2 ReactionsHas anyone tried mullein leaf extract for MAC and bronchiectasis? I recently read that it can clear all the mucus from your lungs.
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1 ReactionShe also mentioned here.
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2 ReactionsThank you. That was very helpful information.
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1 ReactionCongratulations on your 4% improvement! So my big question is: how did you psyche yourself up to do the cardio when you felt so bad? And did you do it every day or ? I can’t imagine joining a cardio class where I would be the one having to stop e wry two minutes to catch my breath. You inspire me!
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3 ReactionsI just saw this comment about drinking tea. I've perhaps missed an earlier conversation about tea, but would really like to know what kind of tea and where to get it. I'm short on sleep due to the whistling and wheezing sounds when I lie down to sleep and am wondering if the tea would be helpful for that?
Thank you for any suggestions you may have.
Jan Skallerud