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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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@alleycatkate I have to do what you describe often, especially in the morning. Used to drive my husband crazy. But after my doctor said it was to help clear up the mucous in my lungs, he has learned to live with it now. I cover my mouth with a towel so I won't make too much noise.
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1 Reaction@marilyns, I am sorry that the emails are overwhelming you; we are an active bunch! If you go to the home page of Connect; you will see instructions on how to navigate and use the site. You can disconnect the email notifications.
@marilyns Welcome to our group Marilynn. You are at the right place to discuss MAC. Many of us are using the big 3 and some of us are using a more natural approach with herbs. It all depends of your lungs conditions and your health conditions. We have different
opinions from doctors but at the end it all come to the same conclusion. There is nothing to panic about Mac and bronchiectasis. First thing my ID(microorganism specialist) said to me on my first visit to him. He said there is many more people who has a
MAC who have never been diagnose because the MAC is not active. The main important things is to keep your lungs clear from infections. Some of us use regular antibiotic like cypro, or the big 3 or natural antibiotics. We all try to find the best approach
to stay healthy! Have a wonderful week and please do not hesitate to ask all your questions? Love Nick52
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3 ReactionsThank you. It's a little overwhelming to consider yourself rather healthy and then have this come out of the blue! I'm just inching my way along now and don't know yet exactly what to expect. Surely appreciate the info and attention of the group.
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1 ReactionIt seems I read that I should disinfect my shower head periodically. Disinfect how often and with what?
Hi Katherine, My name is Rebecca and I was just diagnosed with both MAC and bronchectasis and was trying to access the article you referenced in this post but it was a dead link. I know it has been some time since you posted this but thought maybe you had saved the article and could share it. Thanks!
@desertnurse, Hello, How are you doing these days? Are you under any treatment at this point? I hope that you are alright.
@rwhite725, Hello Rebecca. Katherine is no longer on this site. I am the mentor for this group now. I am not sure which article you are asking about. I can help you locate it though with a little more info. I need for you to go back to Katherine's post where you saw it, then reply to it by first starting your text with @katemn. Then at the end of your text, type @windwalker. This will direct me to that post.
flib, I use silver in my nebulizer and I intake 1teaspoon 3 times for my immune system. Thanks Rita
Marilyn’s, hi! You can use vinegar to clean your shower head, wrap the shower head with a plastic bag filled with vinegar and make sure it’s sealed well to the shower head and you can place a rubber band around it. One hour works well. And maybe once a week?