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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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Dear Windwalker,
Thank you so much for your answer it is deeply appreciated. I just had one and was wondering if it was a procedure done normally. My lung doctor seem to think it is a way to keep the lung clean and dislodge the mucous and do a lab check to verify what
he finds I think. When I saw him it was before the NAET treatment and I had mucous in my throat and some sputum depending what I was eating. After the treatment I was 80% mucus free and the broncoscopy took care of the rest of the mucus. I haven’t had mucus
like I had last year. The clear lungs has help to reduce the mucus and much less sputum. How long it will last ( its been since sept. 22, ) time will tell. Hope it stays that way. I will have my results on my next appointment in nov. Thanks again!
Nick
Here is a question for those going to the seminar at NJH: Is there any evidence or studies being done or even anecdotal evidence that show following the suggested guidelines to avoid NTMs makes a difference in the rate of reinfections? Jan
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1 ReactionIs someone using inhaling saline, do you cough? I got back from NJH and saw Dr. Huitt. she took me off the 4 meds. got me do the aerobka. They did the sputum culture and she said it will take 6 to 8 weeks. Both my lungs have bronchiectasis. Cila
@cila, Hello Cila, I have been doing the inhaled saline for two years now. I do not cough, but that is due to an antibiotic that got rid of my pseudomonas. It apparently killed everything else that caused me to cough violently for the last 12 years also. I feel like all of us with these lung health issues should be on the saline. It is good lung hygeine. Are you doing the saline now?
I had quad-bypass in October 2015. When the drain tubes were removed they ruptured an artery and I ended up in a coma. I came out ok, but spent 7 weeks in hospital. I kept telling Drs I had fever/sweats, joint pain, nausea, vomiting and other problems. They ignored me. Went to Drs all of 2016 until they dropped me saying nothing was wrong. In 2017 I started going to the hospital... same one that did surgery. 5x was diagnosed with pneumonia. Finally went to another hospital and they immediately diagnosed me with MAC using same lab reports from first hospital. put me on ethambutol, rfiabutin and azithromycin. After 9 weeks everything was still the same. raised antibiotics 2 weeks ago. Still very sick, not sure what to do.
@suenfl I'm also in FL...are you near the Mayo clinic in Jacksonville? If not have you someone who can get you there? https://www.mayoclinic.org/patient-visitor-guide/florida/becoming-a-patient
Dear sue fil,
I think they haven’t found out what is really wrong with you. Maybe you should go for a second opinion. My specialist says the only way to be sure it is a MAC is with à broncoscopy where they take sample and send it to a lab. He says sputum analysis is
not a safe way to diagnosed. Do not take for cash what dr says ! Get second opinions.
I was diagnosed from a bronchoscopy
I am in Tallahassee, about 3 hours from Jax.
@suenfl and do you have someone to take you to Mayo as it seems you're not well enough to take yourself...you've got to get there...
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