(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@ginak

If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.
https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961

Jump to this post

@ginak I can't get the site to open for me. I am looking for study center near zip of 53121. Nothing opens

REPLY
@jkiemen

@ginak I can't get the site to open for me. I am looking for study center near zip of 53121. Nothing opens

Jump to this post

@jkiemen Hi Jo Ann – I looked – the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?

REPLY
@sueinmn

@jkiemen Hi Jo Ann – I looked – the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?

Jump to this post

Good morning where do i find the study is there pne near tampa fla 33624

REPLY
@sueinmn

@jkiemen Hi Jo Ann – I looked – the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?

Jump to this post

@sueinmn oh Thank you
I could make the drive

REPLY
@janovr

I moved to Fl. but already had MAC. The two MAC ladies I have met here are also transplants, both from the North. I grew up in NC, but lived my adult life in Atlanta.

Jump to this post

@janovr where in FL are you? I'm in Palm Harbor

REPLY
@windwalker

@boomerexpert I think the world of @america's doctor, as he is also my doctor. I can tell you this, Mayo Clinic only hires the very best medical personnel. They are usually the cream of the crop.

Jump to this post

@windwalker…good news!

REPLY
@migizii

@migizii thanks for sending this…..I live too far away to consider even attempting to qualify but it would be interesting to hear what the study is looking for if someone decides to pursue it (I live in northern Minnesota).

Jump to this post

@migizii I think you were responding to me about the study. If you were, when I clicked on the link they asked me to put in my zip code to find the study in my area. We’re you able to do that? Or maybe I sent the wrong link, I might have sent the link after I put my zip code. Maybe you could google the WILLOW study and see if you find something in your area.
Gina

REPLY
@ginak

If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.
https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961

Jump to this post

When I click on the link I posted it takes me to the main page. There is a button that says “SEE IF YOU QUALIFY”. When I clicked that button that is where it asked for my zip code.

REPLY
@sueinmn

@jkiemen Hi Jo Ann – I looked – the nearest site for you would be Ann Arbor Michigan.I'm guessing that is about 350 miles for you?

Jump to this post

@sueinmn @jkiemen That’s what I saw also.

REPLY
@mariierod123

Good morning where do i find the study is there pne near tampa fla 33624

Jump to this post

@mariierod123 The nearest to you looks like Clearwater. I’m not sure how far that is.

REPLY
@ginak

@migizii I think you were responding to me about the study. If you were, when I clicked on the link they asked me to put in my zip code to find the study in my area. We’re you able to do that? Or maybe I sent the wrong link, I might have sent the link after I put my zip code. Maybe you could google the WILLOW study and see if you find something in your area.
Gina

Jump to this post

I did that but I live so far away from any of the sites according to the US map I saw that it didn’t let me go on.

Liked by ginak

REPLY
@boomerexpert

@janovr where in FL are you? I'm in Palm Harbor

Jump to this post

@boomerexpert I live in Clermont.
I live in over 55
Kings Ridge!
Love it here!

REPLY
@janovr

@boomerexpert I live in Clermont.
I live in over 55
Kings Ridge!
Love it here!

Jump to this post

Oh my Clermont is an hour away from where I live!!

Liked by ginak

REPLY
@boomerexpert

@janovr where in FL are you? I'm in Palm Harbor

Jump to this post

@boomerexpert I am going to the Valspar golf tournament in your beautiful city next week. Any chance you are going to the tournament?

REPLY

@deborahwolf I am not…not big on golf…ironic as my father owned a course in PA… However, I live just 5 mins from Innisbrook so perhaps we could meet for a cocktail one day after the tourney…!

REPLY
Please login or register to post a reply.