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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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@anniepie Thanks Annie! You stay safe too. I can be careful, but my hardheaded hubby is another story. He is not taking it seriously. I had a talk with him already about being careful and washing his hands a lot. And also, do not volunteer us baby sitting for friend's school age kids! We get asked to do that on occassion. He thinks this corona flu is a bunch of huey. But I tell him repeatedly; that they don't close schools and the Louve museum and wear hazmat suits for regular flu! I may need to quarantine myself from him!
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3 Reactions@windwwalker...isn't this the same conversation you had with hubby last year or 2 years ago....???@tdrell aka terri
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1 ReactionLike your reply.
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1 ReactionGreat reply!
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1 Reaction@tdrell Hi Terri. My man is hard-headed, what can I say. Many healthy people tend to not grasp the reality of our health concerns.
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2 Reactions@windwalker ...Terri...hard-headed or short memory.....the even l recall you writing about was offering to baby sit or a party at your place with younger kids....you ended up with an infection as a result....terri aka tdrell
Hi everyone! I have looked back through the last couple pages of this post but didn't see much relating to the Corona Virus. Can you all tell me what special things you are doing:
1). What are the best masks to buy?
2). I thought I saw a long time ago someone suggested to buy like "an air filter necklace" that they used on the plane, but it seems it could be helpful right now more than the plane.
Thank you for your help if you can.
Amy
@beatitnow i take CLEAR LUNGS Extra strenght by Ridgecrest at least once a day to keep airways open and clear. You can purchase it at The Vitamine Store. I also stay home the safest place. Mask is only protecting you from putting your hand in your face. Keep your hand away from tour face stay safe!
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1 ReactionI am staying home. I'm over 60 and have lung diseases, copd and bronchiectasis, so I'm doing what is recommended and staying home. Friday, I took my last water aerobics class for who knows how long and took the dog to the vet for a treatment for an ongoing condition. She needs to go back again next week so that will be my next time among people. I take her out 3x a day and avoid people but I am a nervous in the elevator. Although no one in my building has tested positive, I hope no one sneezed or coughed in there before I got on. I wear gloves but they don't protect my lungs and Dr internet says the virus can live up to 3 hours in the air.
As for masks, only the n95 or 99 keep bacteria and viruses out. They need to be tight so no air can get in the sides or anywhere else. They are recommended for sick people to keep their germs away from the rest of us and not recommended for anyone else except medical staff. They are uncomfortable and wearers tend to touch them making them a hazard rather than a help because the virus gets in by our hands touching our faces. Besides, you can't get them now anyway. Hoarders are being asked to donate them to hospitals which are running out of them.
I hope there is something in this long post that is helpful.
Rita
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2 ReactionsYou gave me some important details of what we need to remember. It is so hard to live up to all these new life changes. Stay well. Jane Brown