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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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@nick52, this post may not have reached Colleen because the @name you entered was incorrect. Try @colleenyoung .
@1478, Hi Cheryl. No, that post was not directed to you. It was meant for Colleen. It looked like it was meant for you because she did not have the proper @name at the beginning of her post. Therefore, it landed right after yours. I noticed that you are not putting the @name at the beginning of your post (see how I did this post? Before I said "Hi Cheryl") If you do not put that in first when replying to people, your post could land anywhere in the thread. All new people to this site make that mistake, including me. It keeps the conversations connected.
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1 ReactionThank you, I understand now, an easy fix.
@windwalker. I am so confused with it too. Do we have to do that also when we are sending a private message? How do we know if our message went to the right person?
FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) - Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.
@nick52 When you try to send a private message to a particular person on this site, you will need to know their correct name also. The different is this: when you respond to someone's posting here, you start with @ then start typing the name after that. You will be presented with one or more names that start with the same letters. If the one you want is already in the list, you can stop typing and click on it to select it. Like I did in this posting to you. Without the @name, a lot of times people won't know whose posting you are responding to. When you try to send a private message to someone on this site, you click the envelope symbol at the top of the browser, then click on Compose for a new message. Start typing the name (without @). Again, you will be presented with one or more entries as you are typing. You can click the correct name when it shows up to select it into your Recipient field. Hope this helps.
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1 Reaction@1478 dear Cheryl, did you get my long long private email.
Nick
Yes!!! Thank you!
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1 ReactionThank you, Tamela, will do. Very glad you have someone to help with your care...imagine being by yourself...one blessing at least.
Dear Cheryl @1478 and @nick52
I have sent you both private messages describing how it works. However, I encourage you to continue to share on this forum. By asking and answering questions on the forum you benefit from the group knowledge. The questions you ask are likely questions many here would like to hear the answers to. And there are likely many people sharing on this forum who have answers, experience or tips to offer to your questions.
As @ling123 described, when you reply on the forum, it is advisable to start your message with the person's name or @username if you are addressing a specific person. Naturally the message is still read by everyone and anyone can respond. That's how we share. 🙂
I hope this makes sense.