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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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@sophie1019 Sophie, was your dx the abscessus form of mac? MAI? If so, what year were you diagnosed?
From reading many of your posts and researching pulmonary infections on the web, I wonder if my husband has received good care here in central Florida. When he was first diagnosed with pseudomonas aergera, he was put on cippro. It did not help. After that his sputum culture continued to show pseudomonas but the Pulmonologist and the Infectious Disease doctor did not prescribe anything. Then in Dec., 2017, his x-rays showed pleural effusion. X-rays after that continued to show small amounts of fluid by saying, patchy basilar infiltrates, basilar consolidation and also bronchialastis. Still no recommendation for an antibiotic. Now, we are waiting for the second culture results to confirm Mac. I do not understand why a different antibiotic other than cippro wasn’t prescribed and if it was, maybe we would not be facing Mac.
I just now read my husband’s sputum culture report on the doctor’s portal. It reads in all capital letters, ACID FAST BASCILLI PRESENT, MORE INFORMATION TO FOLLOW, PENCILLIUM SPECIES. Does this mean he has the Mac infection?
I was diagnosed in 2016.
Also, do you know who uses Clear Lungs and how is it working? I just bought some.
@suzie2017 the results may not be in yet for mac diagnosis, it takes 6-8 weeks for that to grow. It is only mentioning what is known to be growing presently.
OK. Thank you
@suzie2017 I just googled ACID FAST BASCILLI PRESENT and one of the explanations is this: "Sputum, or phlegm, is often used to test for Mycobacterium tuberculosis, to find out if a patient has TB. This bacterium is completely acid-fast, which means the entire cell holds onto the dye. A positive test result from the acid-fast stain confirms the patient has TB". Because you husband does not have TB, it seems to suggest that they have found MAC, which is a non-TB Mycobacterium very similar to TB mycobacterium. I suspect some medical facilities are using the same technique to testing both. I'm not a medical person. So this is just my personal understanding from reading up on the internet. You might want to spend sometime using google to find more information.
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1 ReactionDoes it have Licorice root
Thank you ling123. I am under the same impression that this is a definite diagnosis of Mac since it is the second phlem culture indicating MAC. We have not heard from the Pulmonologist as of yet.
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