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.

alleycatkate | @alleycatkate | Mar 13, 2019
In reply to @ktkarenst "I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This..." + (show)
@ktkarenst

I hope I'm not butting into a conversation that I shouldn't. I too, have MAC. This is my second go-round. I was first diagnosed in June of 2017. I took the standard 3 antibiotics for a period of 12 months and was told I was cured. When I went in for my yearly check up, my Dr. ordered a CT and it showed up in the scan. I had a Alveola Lavage and will see my dr. on the 20th for formal diagnosis. From what I'm reading, it doesn't sound very promising. This second time is so different than from the first. I can really feel it this time. I'm so sorry you all are having to go thru this. If anyone has any suggestions, I would love to hear them.
Again, this is my first attempt to join this group and I'm not sure of how to get started, and I'm sorry if I shouldn't have responded here.
ktkarenst

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@ktkarenst...You will find this a very receptive group to help with any of your concerns. I am sorry to hear that you are on your 'second go-round." I wondered too if you were diagnosed with bronchiectasis as Terri asked. Often the MAC & Bronchiectasis go hand in hand. I also wonder if you might do well with a second opinion after your upcoming appointment? I have very mild MAC and Bronchiectasis yet my 'second opinion' Dr thought that nebulizing a 6% saline solution would be helpful. (same Dr as Terri Windwalker) Since you say you can now feel it in your lung and could not before, perhaps the mucous is building up and nebulizing saline could be helpful for you. It seems to be just good lung hygiene to help thin and get the mucous up and out. (Important to hinder "bugs" from developing.) Wish I could offer more help and suggestions. Good luck to you and welcome to our very "exclusive" group. Kate

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alleycatkate | @alleycatkate | Mar 13, 2019
In reply to @alleycatkate "@ling123 I totally agree with your view on sugar and white carbs. I too tend towards..." + (show)
@alleycatkate

@ling123 I totally agree with your view on sugar and white carbs. I too tend towards higher blood sugar levels (pre-diabetic) even when I do not eat sugar and very rarely eat white carbs and also limit fruits. I've found an Ayurvedic herb called Gymna Sylvestre taken daily brings my sugar levels down very well. I think we need to do all we can to stay as healthy as possible.

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@ling123 ...Ooops...mispelled that herb in case you are interested....Gymnema Sylvestre. Sorry.

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ginak | @ginak | Mar 13, 2019

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

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3 replies
migizii | @migizii | Mar 13, 2019
In reply to @ginak "If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking..." + (show)
@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

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@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).

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1 reply
Jo Ann K | @jkiemen | Mar 14, 2019
In reply to @ginak "If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking..." + (show)
@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

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

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 14, 2019
In reply to @jkiemen "@ginak I can't get the site to open for me. I am looking for study center..." + (show)
@jkiemen

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

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@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?

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3 replies
mariierod123 | @mariierod123 | Mar 14, 2019
In reply to @sueinmn "@jkiemen Hi Jo Ann - I looked - the nearest site for you would be Ann..." + (show)
@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?

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

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1 reply
Jo Ann K | @jkiemen | Mar 14, 2019
In reply to @sueinmn "@jkiemen Hi Jo Ann - I looked - the nearest site for you would be Ann..." + (show)
@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?

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@sueinmn oh Thank you
I could make the drive

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boomerexpert | @boomerexpert | Mar 14, 2019
In reply to @janovr "I moved to Fl. but already had MAC. The two MAC ladies I have met here..." + (show)
@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.

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

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2 replies
boomerexpert | @boomerexpert | Mar 14, 2019
In reply to @windwalker "@boomerexpert I think the world of @america's doctor, as he is also my doctor. I can..." + (show)
@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.

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@windwalker...good news!

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