(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert @auntnanny Hello...Pardon for butting into your conversation but had to voice up. I had a profound experience with arthritis. MY hands were becoming almost crippled, unable to make a fist, scruff my cats, pick up things... I bumped into this by chance. I eliminated all milk products from my diet...not for health reasons but because of the intense cruelty to the cows in the dairy business. Anyway..in short order my hands were like that of a teenager. Truly! I then went on a juice fast for 4 days and at the end of my fast I had eliminated the painful bursitis in my shoulder. So my intolerance or allergy to Gluten and Milk were behind all of this inflamation in my body. I did not have RA but Osteo, but I see many articles linking Milk etc to RA in the body. What I just came up with by googling RA and milk is sort of startling...they are talking about MYcobacterium Avium in Cows.... Is this co-incidence? https://www.healthline.com/health-news/beef-milk-bacteria-may-have-negative-impact-on-rheumatoid-arthritis I do not remember the time period from the elimination of milk to total relief but I believe it was no more than a few weeks...worth an experiment maybe??

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Allyecat,I've given up milk products for the same humane reason. The cruelty is horrible. I realized I felt sick when I ate ice cream or made a smoothie with milk. Now, I use Flax Seed milk,... in many stores, and I like it better than Almond Milk. It's encouraging to read about improvement by taking control of one's health.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@alleycatkate, Hi. After reading Dr. Weil's books about 10 yrs ago, I too gave up dairy and gluten. I saw a marked difference in the amount of phlegm I produced. I then paid attention to food triggers such as dyes. The yellow dye in Mountain Dew really messed me up, as did the colors on the M&M candies. I love that we have a mix of members on here that lend Naturapathic input.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@alleycatkate @auntnanny You're right, Kate...dairy is a known source of inflammation...I have been dairy free since my RA dx in 2009...when I have a bit every once in a while as a treat (pizza with light cheese) I do so knowing I'll feel it the next day...I always do. I, like you, eschew all animal-based foods from agri-business/factory farms as the torture endured by these social, sentient, intelligent beings is inexcusable and I couldn't count myself as a true animal lover while supporting such egregious practices. Glad to know you fell the same way.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@america as I mentioned, you can get CBD oil legally via the internet...that's without an Rx or doctor...I recommend Charlotte's Web Advanced

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert ...always lovely to find a like minded spirit! To me there is nothing more evil on this planet then factory farming.On a nicer note...I am glad you experienced a similar positive result from elimination of dairy. All we need now is to eradicate this darn MAC!! Good luck to you on your journey. Kate

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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boomerexpert so glad to read your words. It is exactly how I feel about animals. Difficult to understand why more folks don't feel the same.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@flib...I will have to try the Flax seed milk. Thanks! I am also glad for your compassion!

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@flib most disconcerting is those who claim to be, and I'm sure really believe they're animal lovers, yet don't care how food animals are being abused for higher profit and a bit lower cost to uncaring consumers. I inform folks of the terrible conditions and they just shrug...or their eyes glaze over...either way they simply do not wish to do something for the animals...

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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My experience also. I think people are afraid they will have to give up meat and food is very front and center for some...don't mess with it. And, if they let themselves know how truly awful, some of it is,beyond belief, they will feel guilty and a pleasure will be taken away. Thus, head in the sand. But so many of the meat products are bad for health. What goes around.....

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