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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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I wonder if any of you have been told to take probiotic (professionnal) ? I also wonder if any of you have tried the natural remedy " clear lung" to clear the mucus out of your lung?
Good idea heathert
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1 ReactionThey didn't recommended PROBIOTICS? That gives you good bacterias to fight the bad one to colonize.
Dear Windwalker,
Yes I had a broncoscopy two or three years ago. This is when they found out that I had a MAC and when I was transferred to a specialist.
A good rule of thumb I have found is to be treated because later is not always a good choice. It is better to be treated when you are "younger and healthier" than older and not so well. I wondered that as well. I don't wonder anymore. I learned the hard way!
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1 ReactionIf you positively have MAC, the only treatment is antibiotics. I would not hesitate because it will only get worse not better. There may be remedies that make you feel better but believe me, no other cure. The antibiotics are not that bad. I had no side effects at all and I've been taking them for 7 years (except rifampin). I also had tree in bud and nodules. If the broncho is negative for MAC, then you're probably OK and don't need anything.
Suttonmac: Are you taking the antibiotics for 7 years because you never cultured negative?
Dear windwalker,
I am very aware of Probiotic. I have use this with my brother who had a double transplant for lungs. He had a a bacteria and big infections within the lungs. He had intravenous antibiotic for two months but his infection was getting
worst. So he was dying so I got him on high doses of good bacteria and within a month he was cured. I will never stop believing in probiotic. I and he was convinced it saved his life. My specialist recommended to take professional Probiotic from Dr Ohhira's
(check on web). I have just started those. We'll see how it will work. The dr. Says we can't drink enough kefir or eat yogourt to make a difference with the MAC. It is not strong enough. I really feel great since I take those. They are expensive but I have
no more sputum but we will have to wait and see. I didn't had much also with the clear lungs. Milk product is a mucus forming and i would cough sputum mostly after eating it. Fermented Probiotics are dairy free. I will keep you posted on these.
Hope it will help!
I was tested positive for MAC 3 years ago but have never been on the 3 big drugs that most people on this forum have taken. I do have a lot of mucus but no other problems. No shortness of breath or other symptoms of decreased lung function. The excessive mucus is pretty much due to bronchiectasis that I'm also diagnosed with. I was given an option to be on long-term antibiotics and was also warned the possibility of the drugs' long-term effect on my other organs. I chose not to take them. I suppose everybody has a different situations and physical conditions so they all need to make decisions that best suit them. I suppose if you are still tested positive for MAC but don't have bronchiectasis, you could consider taking these antibiotics for a short period of time to clear that up and get off once the test results come back negative. If you also have bronchiectasis, bear in mind that it is incurable although manageable. Taking antibiotics long term will not help with bronchiectasis. However, bronchiectasis can make you vulnerable for catching infections including MAC.