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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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So, I've been doing the few drops in the saline solution for about a month...still here. I am not a candidate for any of the antibiotics prescribed for mac. I cannot say if this is a helpful thing to do. Nebulizing the saline solution has definitely helped me. If I can clear my lungs I feel less weak. Breathing does make one feel more jolly. I do this twice a day. I have a hand held nebulizer (about $25 on Amazon) and I watch the news while I use it. It does cause me to cough,, sometimes quiet hard,, but that's the point. I take an antibiotic faithfully twice a day and I am now also into Lost Empire herbs to help me with energy level. Wish I could be more helpful but I promise to let you know if anything goes awry or improves.
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3 Reactions@flib
Do you mean you take a "probiotics" twice a day?
Please do keep us updated on your response to the silver Hopfully it does the trick!
What are in the list empire herbs you take?
Best of wishes for you!
Shari
@suzie2017 what were the criteria the Dr used to determine he should start on big 3?? what about sputum specimens...what did they show?? what did chest CAT scan show? tdrell
@gaelawree Hi there! I hope that today finds you doing as well as you were doing the day you posted this. I suppose you will be starting the Will you please check back and let us know how you are doing with it? I love your positive attitude!!
MAC was confirmed with two sputum cultures which were sent to Colorado and a bronchochial washing from being bronchoscope. The washings were also sent to CO. All confirmed MAC
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1 Reaction@windwalker Hi Terri, yes I am doing well, thank you for asking. I have started the 1st & 2nd antibiotics & starting the 3rd on Monday. So far it’s going real well. I’m tolerating the antibiotics. I hope I do with the 3rd one too.
I get notifications from the group everyday & usually read them all. There is a lot of info. When I have Info to share I will post. Pretty much staying about the same right now.
@nick52 I will be going off the anitbiotics in next 6 months so will up my probiotics then and hope they kill the bad bacteria like the antibiotics do.
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1 Reaction@flib ..Thanks for sharing that. Wish you good luck with it and good health. Kate
Thank you so much, Shari.
@windwalker I agree with you Terri the small amount we take in Clear Lungs and Breath ease is not dangerous at all if taken in moderation. Those who have a high blood pressure may have to try it to see if it raised there blood pressure. I have used the DGL
licorice who is the one recommended. I use breath ease tea also and it is good to clear the airways and lungs. I was told to take DGL licorice if taken on a long period and apparently that deglycyrrhizinated
licorice (DGL) is safe!
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