1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

terryb1 | @128128terry11t | Jan 18, 2018
In reply to @boomerexpert "@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe..." + (show)
@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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tdrell | @tdrell | Jan 18, 2018
In reply to @boomerexpert "@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe..." + (show)
@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 | @boomerexpert | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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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terryb1 | @128128terry11t | Jan 18, 2018

@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 | @boomerexpert | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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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unicorn | @unicorn | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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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unicorn | @unicorn | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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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Jo Ann K | @jkiemen | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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 | @boomerexpert | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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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ginak | @ginak | Jan 18, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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 sharing. I also received this email, but didn’t get a chance to try to share it. I did contact David and received a response that said they “had an overwhelming response” and they are preparing a survey. So if anyone hasn’t emailed David@just-worldwide.com you should do it so you can also take the survey when it’s ready.
Gina K

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