(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

@tdrell

@mac5ia….welcome to the site/group. I so far am not on the antibiotic treatment but am monitored at National Jewish in Denver. Many others are on or have been on Rx. They will no doubt share their valuable tips.
And also….read and view all past comments on this site. And as time and energy allows there are videos recorded at patient centered workshops that are awesome.
NTMINFO.org is a very helpful bridge…..
Again…welcome. Tdrell

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@mac5ia Welcome ! It will be a pleasure to support you with that MAC. We all know what it is all about! Keep asking question. Be persistant and keep your courage.

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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 If you are not sure if your reply has been sent or not, you can open the private messages, click on Sent Mail link. You should see all of the messages that you have either initiated or replied. If you don’t see it, it was not sent. If the message has had back and forth between you and another person, you want to open the thread to read all the communications to see if a particular reply you are looking for is included or not.

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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, Hello. I tried the link that you posted and it just took me to a generic website saying they do research world wide or rather help researchers. It did not mention any NTM research. I don’t know if I just didn’t dig around hard enough or what….I have not tried calling him yet. Have you looked into this at all?

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In reply to @mac5ia "Thanks" + (show)
@mac5ia

@mac5ia, Hi, do you have a first name that you would want to share with us? It makes our conversations more personal. I wanted to tell you about another site called http://www.ntminfo.org they are a research institute dedicated to just NTM research. NTM is the same thing as mac. The letters stand for Non-tuberculosis mycobacterium. They have a registry of people with MAC/NTM. They are asking that all of us that has this disease to please register with them. The reason being is that they need to show real numbers, (proof) of necessity when they ask the government for grants for research, and proof to drug companies that there is a real need to research to come up with better drugs for treatment. MAC has been considered an ‘orphan disease’ and rare, so it is hard to get funding for it. Like the million woman march, we need to stand up and be counted!!! I have signed up on the registry and encourage everyone who has this to do so.

Liked by tdrell

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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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@,nannette , Nannette! I was just thinking about you yesterday. Was wo dering how the heck you are doing. I hope that you are not back on this site because you are having lung issues.

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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 for keeping us posted, tdrell

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@boomerexpert

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed…NJH is very disappointing with their focus on everything but MAC/NTM’s…Do you have contact info for this Dr. Daly so we can contact him en masse?

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@tcrell Please ask if it is true that we now only have to boil the water for 5 minutes instead of 10. Thank you.

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@boomerexpert

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed…NJH is very disappointing with their focus on everything but MAC/NTM’s…Do you have contact info for this Dr. Daly so we can contact him en masse?

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@128128terry11t where did you read the change or hear it re 5 minutes for sterilizing water? Tdrell

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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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I sent him an email which he read…recommend you do same…contact them directly.

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@tdrell One of the respiratory therapists at National Jewish mentioned it (boiling for 5 minutes instead of 10). Just wanted you to ask to make sure that I did not misunderstand — always a possibility! Terry

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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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Just heard back:
Thank you for your interesting in our study. Due to an overwhelming response we will be programming the screener questions. Within the next couple of days you will receive a short 8 minute survey to see whether you qualify for our research. If you are selected, you will receive a follow-up call to schedule your interview. Please let me know if you have any questions.

Have a great day,

David

I responded that I hope he pays attention to the “overwhelming response” as a clear indicator of how great the need is…

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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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is that David from Ait?

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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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I just wrote to him also. mentioned Nitric Oxide also. xo Christa

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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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I got the same message back and I also sent a reply that they now have their first clue that this is a real problem. Everyone needs to keep responding

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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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No…from just-worldwide.com as noted above

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