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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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Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!
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1 Reaction@allieycatkate Ha ha ha! That thought did cross my mind! Thanks for the chuckle!
@unicorn Ha! My sister and I have a favorite saying (as we get older) 'It's getting harder and harder to look cute'. Have to laugh....
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2 Reactions@physillistemara My wife was on the same three med as you mentioned. She was able to tolerate them for six months. Of course she had other medical problems. She is immunosuppressed due to liver transplant. Eventually she will have to go back on something to suppress her cough. I am going to suggest, if you do go on the meds, please do regular checkup to make sure the side effects are worse than the cure.
everyone....two NTM workshops coming up...one in texas. in spring 2019...go to NTMINFO.org to see one......the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend.....probably the NJH one will be taped.
Other items you might be interested in.....
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test...….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies...………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell
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3 Reactions@tdrell, thanks for the information.
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1 ReactionGreat news thanks T!
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1 ReactionI cannot find who asked re M.gorgonae.....I just looked it up on Nationaljewish.org with search box.....it says rarely needs treatment...exists in lots of water supplies...usually if found is a contaminant from water source.tdrell
Yup, hahahaha
THIS IS TO everyone. My son having baby soon, I will be around a lot, What cautions if any should i take, Mask all the time? I can get fancy one and be a super hero.......