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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Yes, that is good advice. Maybe even bring a friend as well. The more eyes and ears the better. It is often hard to understand things when we are so close to the situation.
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1 Reaction@hallann good if it is the only symptoms! You may want to try Clear Lung (blue bottle) to clear the lungs of mucus. It was the same with me I was coughing but the clear was clearing the lungs. I know it worked for me when I was coughing but noone is
alike!
Nick 52
Thank you
@suzie2018 no wonder your husband feel tired with this diagnosis Suzie! It is not tnr Mac is big problem I think it is more his COPD problem. You must request an appointment with your family doctor to get an interpretation of the report. The lab result of
his bronchoscopy will take few fews to a month. You also can google collapse lung etc.
I will keep him in my prayers and keep up the search! Nick
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1 ReactionThere's so many of them is there a brand that's better
Has anyone been to National Jewish Health in Denver Colorado?? I did a phone consult with them this morning; pending an appointment. I am just trying to figure out if I will need to take a week off of work to fly up there or if it will just be an appointment 1 day.
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1 Reaction@cowgirlmt many have including this forum's founder...read through and you'll find lots of references to it!
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1 Reaction@ hallann yes Ridgecrest clear lung blue bottle. It as lung decongestion in it! Nick
@suzie2017 Hi Suzie. The fever you husband has plus the report from the doctor's findings suggests severe lung infection. It seems to me that he needs good antibiotics NOW. He sounds like he is in very bad shape, they may want to put him on an IV. Please make sure this I.D. doctor is knowledgible in mac infections. If your husband continues to suffer before his next appt. have him go to the emergency room. They may go ahead and admit him and put him on IV. I had to do that myself last year. Your hubby sounds like he is in respiratory trouble. A collapsed lung is serious. Please keep us posted on his condition. Hugs -Terri
@cowgirlmt Oh my gosh girl! You have no idea how glad I am that you will be going to NJH Good help is on the way! @tdrell (Terri) has been there several times for treatment. I am sure there are others as well who will hopefully jump in. You will need to make the appt. first and ask about what tests they want to run on you. The Mayo ran all of mine in one day and then I met with the pulmonologist at the end of the day. We went over test results and a treatment plan. Please keep me informed about when you are going. You of one those on my 'Most worried for List'. You may not hear from me every day, but I worry about you every day. That goes for others that I know of that are very ill and feeling especially terrible. For now, cyber hugs for you.