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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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Regarding the color of sputum, currently mine is either yellowish, or white foamy. I have MAC and Bronchiectasis. Does the yellow sputum indicate that the bug is active such that I should keep taking antibiotics or anyone experience similar sputum but can stay free from antibiotics? I’d like to hear your thoughts. Thanks!
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1 ReactionHi, I have these colored sputum all the time. After exercise and yoga especially. Then I nebulize and its sort of a clean up what sputum is left for the most part. I dont take antibiotics and my doctors encourage to rid my lungs of bacteria, this is what it is. I have been doing this for two years. I guess the good news is that my condition is not getting worse. My doctor said if it get worse, Ill have to have antibiotics. Good luck, Hal
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1 ReactionUsually when I have an infection my sputum becomes greenish. And sometimes smells kind of rotten. However color alone cannot tell. Are you able to have a sputum culture done to determine your infection status? If I remember correctly you are not in the US.
Sue
Hi Sue, yes I did culture and it came back MAC as usual. I have yellow sputum whether I take antibiotics or not. I suppose the MAC is resistant already. I will try stop the antibiotics and see how it goes. Thanks!
I fired a pulmonologist for the same reason, combined with his erroneous recommendation that I have a bronchoscopy (lung lavage), which turned out to be an unnecessary surgical procedure. I learned through my journey with MAC and bronchiectasis that a bronchoscopy was not necessary and should not be the first step in getting a sputum sample from asymptomatic (non-coughing) patients. This pulmonologist put me through an unnecessary, risky surgical procedure that a respiratory therapist was subsequently able to obtain the necessary sputum with a 20-minute therapy session. And the pulmo was the second pulmo to recommend a bronchoscopy. I hope this post might cause others to inquire about alternative methods of obtaining sputum samples beside a risky surgical procedure.
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3 ReactionsKathi - Thank you for that helpful reminder. It happens way too often because medical offices are not properly staffed with the needed professionals as a cost-cutting measure.
I was lucky that my original pulmonologist had played his "seniority" card and been able to keep 2 pulmonary nurses instead of medical assistants on his staff. His nurse was able to walk me through a 10% saline treatment to get the sample.
The added benefit - the clinic/hospital practice was able to see that this actually resulted in lower overall costs. All 3 of their pulmonology practices have both pulmo RN's and RT's on staff, which has cut referrals for hospital testing and hospitalizations!
Sue
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2 ReactionsHi Sue... Please share your thoughts about "good regimen of probiotics" during drug treatment. I currently take 1 JarroDophilus a day, but am thinking 1 three times a day may be better while taking meds? What's your experience?
I may not be the best person to ask...I was lucky to get one probiotic a day in when I was on the antibiotics. After some reading, the most common threads in the non-advertising articles were variety & freshness. So each month, I reached for a good name brand, different from the last two or three I had taken, on the shelf in my very busy Walgreens store. At the time, there was one (don't know which) that was called Antibiotic Support - it seemed to have a very good variety of cultures. It is what I shop for now if I have to take any antibiotics.
Sue
Hi Sue, I always have this color sputum. As you know I have B.cepecia colonized and wondering if I have infection from it. It shows 2+ in last culture. Doctors, both pul and ID are not treating 🙁 I cough when I have mucus. After airway clearance, cough tend to stop. I'm confused. I apologize for sending you my sputum, it is not a good sight to look at. I want to know if you have the same color.
New to this group, recently diagnosed with MAC, haven't started treatment yet. I am healthy, active, good immune system, never sick, take no meds. Thinking about something a few days ago. Evidently this bacteria thrives in warm moist air. For the last 25 years I have slept with a CPAP, exclusively inhaling warm moist air for 8-9 hours daily. I have now turned off the heat and humidifier and will discuss with the pulmonologist next week. Not suggesting the bacteria homesteaded because of the CPAP, but question the continued use of the humidifier now that MAC is diagnosed. Any CPAP users here that have thought about this and/or have received guidance from their doctors?