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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 am starting my 4th month and was doing pretty well other than recent development of palpitations. I hope I can make it to at least 14 months of treatment and get the results you are having
@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!
Sorry to hear about your palpitations. Which meds are you on?
Many of us with MAC/MAI also have asthma. When I developed palpitations it was because of Dulera , my asthma prevention inhaler. Switching asthma meds did the trick. Speak with your physician about what could be causing your palpitations.
Best wishes on your long road to wellness.
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1 Reactionthank you for your response - I'm just learning as much as I can and praying about how to use all the good ideas.
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1 ReactionKeep up the prayers. We all can do that.
I think all responses from group all demonstrate such caring people.
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1 ReactionGreat idea!
Please tell me how to deal with thick liquids. How do you get enough water to meet the daily requirement? The thick gel water is gross. I’m trying to stay hydrated but can not do thin liquids and literally gag trying to get the gell- water down. I’m supposed to drink over 60 ounces of water per day. How can you stand it?!
Cool idea! Thanks for the encouragement Sounds like you are making the best of it with a Can- Do attitude!
Thank you! I will check into that.i do think the probiotics really are legit.