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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’m know I’m not doing this correctly, but I have a question. My 89 year old aunt was only able to tolerate the “Big 3” for a few days as she was having horrible side effects. She has a cough that won’t go away. She has a nebulizer that doesn’t seem to be working, neither is the inhaler. What can you recommend for the cough? The pulmonologist thinks the “vest” might work. We aren’t sure she’ll qualify for it though.
Thank you and I’ll do my best to navigate this site correctly,
Renee
@pfists @jkiemen @heathert @windwalker Thanks for following up on this Shari. We could have guessed as much from their website -- they seem to want to focus mostly on active cystic fibrosis.
Fairly similar numbers of people are diagnosed with NTMs each year compared to the numbers diagnosed with active cystic fibrosis. But those with active cystic fibrosis are diagnosed far younger, often as children. (NTMs are regarded as ONLY an 'old people's disease', although that isn't true -- 50% are younger than 65 and some are children).
There's been research around for 15 years that NO can reduce pseudomonas aeruginosa, but Vast has a new and better delivery system to try out.
The Vast Therapeutics study we looked at showed success with NTMs (https://cysticfibrosisnewstoday.com/2018/05/24/vast-therapeutics-bioc51-fares-well-mouse-studies/ or https://www.prnewswire.com/news-releases/vast-therapeutics-formerly-novoclem-announces-results-showing-eradication-of-all-in-vitro-tested-multi-drug-resistant-bacteria-and-a-99-reduction-of-nontuberculous-mycobacteria-ntm-in-animal-model-300652648.html).
Past methods for inhalation of ordinary NO gas didn't work to get rid of NTMs or TB, but this new controlled release system Vast has developed does seem to be effective with NTMs.
It's a shame that people with NTMs haven't got the political clout to lobby drug companies to promptly pursue successful research results for NTMs. I wish there was something we could all do about that!!!
Anyway, there seems to be another study with NO for people with NTMs underway at University of South Carolina in 2018-2019, although it's not clear if they're using the new controlled release systems or not: 'A Proof of Concept Study of Inhaled Nitric Oxide for Adults With Pulmonary Non-Tuberculous Mycobacterial Infection' -- https://clinicaltrials.gov/ct2/show/NCT03748992 . (Principal Investigator: Patrick Flume, Medical University of South Carolina). Does anyone know anything about this trial?
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3 ReactionsHi windwalker and all! This is interesting because IPF reminds me of NTM! I never heard of this disease until I got it! Well in 2002 it was the very first time I heard about IPF. That’s when my late husband of 29 years was diagnosed IPF. We lived in NY at the time and I tried to get him the best doctors in NY. But he did not get a transplant and he died 18 months later in 2004. I hope and pray that this will be available soon and people could get some help. He was only 54.:) life goes on! Rita.
yayaaz ----- I have a lady friend who is with National Jewish in Denver. Almost every month she goes for a bronchoscopy and says it really clears things out. I'm with Mayo's in Rochester and I've never had one but I was just thinking you might want to ask about this for you aunt. I'm not medically qualified to answer anything but I know what she does. She's had this for many years.
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1 ReactionThank you so much.
I have been on the big 3 for 3 months now. Because I have a doctor who is into preventive medicine - apart from my lung doctor, she stopped my cough last August within three days with supplements only she can get as a doctor. Find a doctor who is into preventive medicine - my blood tests show no damage to my organs. My lung specialist does not particularly approve or disapprove, and probably mentally pats me on the head. However my doctor on the Gold Coast is right on the ball. I coughed violently for 8 months, stopped within three days of seeing her, and have barely coughed since. I am tolerating the big three surprisingly well, and on the other days taking Dr. Elen's supplements. She gets them from New Zealand. By the way I am on the Gold Coast in Queensland Australia.
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2 Reactions@pfists Fingers crossed all right, heres hoping, just wish it diddnt take so long.
To windwalker. Thanks for the update and how encouraging that research is being done at Mayo with hope for the future!
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1 ReactionWhat exactly is new direction for MAC? Jane Brown
@migizii. My pulmonologist recently prescribed “the vest” for me too as I have difficulty removing mucus. I am not quite old enough for Medicare so I don’t know if your aunt will qualify, but I went through RespirTech in St Paul, MN and they were very helpful navigating everything! Their phone number is 1-800-793-1261. I got this company recommendation from Mayo Clinic in Rochester, MN. I do not know what areas they work with around the country, tho.. good luck in your journey.