(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@coleen can you tell me if I can read email send privately

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I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@nick52

@coleen can you tell me if I can read email send privately

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@nick52, this post may not have reached Colleen because the @name you entered was incorrect. Try @colleenyoung .

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@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.

Liked by 1478

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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Thank you, I understand now, an easy fix.

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@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?

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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.

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@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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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@1478 dear Cheryl, did you get my long long private email. 

Nick 

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Yes!!! Thank you!

Liked by tdrell

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@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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Thank you, Tamela, will do. Very glad you have someone to help with your care…imagine being by yourself…one blessing at least.

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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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.

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@boomerexpert

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.

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@boomerexpert. Thanks so much for this information! I will definitely call or write and see if I can participate. Nan

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@boomerexpert

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.

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@boomerexpert 

Thanks Boomexpert darling! Real nice of you to share with us!

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@1478

I’m not sure if this is directed to me, kinda confusing. I have no secrets and all my emails are open. I send them privately because I’m new and havnt heard or read all the testimonies and don’t want to repeat this over and over for everyone else.

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@ling123. Thanks  for your help.  I am doing that my question was am I able to find my reply?  If my reply is too long it says an error may have occured that is my confusion her ling! 

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