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!

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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:
- 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.

spencersok | @spencersok | Jan 23, 2019
In reply to @nick52 "@spencersok, if she can take the big 3 find natural medicine to help her cough. For..." + (show)
@nick52

@spencersok, if she can take the big 3 find natural medicine to help her cough. For example Clear Lung with Ridgecrest is good to clear lung congestion, probiotics are also helpful for infections, etc. Consult a naturopath they can help her probably more than the big 3 in her case. She needs to stay away from mucus forming food like dairy, fried food, sugar etc. Check the internet they will tell you which food forms mucus. Many people can’t take medication. There body reject it because it is not for them. I have bronchiectasis and had the MAC and never taken medication but I do use natural medicine. She has nothing to loose trying. Even a nature food store could probably hernher a bit. Medical doctor can’t help when your body react to medication (pharmacy). I will keep her in my prayers and as the highest to guide you to a solution. Have a lovely week!

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@nick52 Thank you very much for this information.

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yaggi01 | @yaggi01 | Jan 23, 2019

@heathert Hi, thanks so much for the info on the lozenges!!! I ordered them from Amazon and with them coming from the UK, the projected date of arrival was the middle of February. I was surprised yesterday when they arrived and the timing was perfect as I have been battling a slight sore throat. Used one today and they are amazing!! Thanks for sharing!!! Blessings, Yaggi01

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heathert | @heathert | Jan 23, 2019

@yaggi01 I am so pleased they worked for you like they worked for me. If I go to a chemist that doesnt have them they get them in for me, Maby your chemist could do the same thing. Thank you so much for letting me know. Heather

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america | @america | Jan 23, 2019
In reply to @heathert "Hi Rita They are called Strepfen, they are Strepsils with neurofen in them. They were wonderful,..." + (show)
@heathert

Hi Rita They are called Strepfen, they are Strepsils with neurofen in them. They were wonderful, sometimes I would break them in half and just have half. Heather

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I tried amazon and all the pharmacies on line... no one carries it in the USA! I’m not sure how to get. Thanks Rita

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1 reply
lindam272 | @lindam272 | Jan 23, 2019

@america - I just Googled the name when I couldn't find on Amazon. You will see options for ordering when you do that. Let me know if you still don't and I'll try again. I've never ordered but wanted to have the info for if/when needed. Linda

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1 reply
yaggi01 | @yaggi01 | Jan 23, 2019
In reply to @america "I tried amazon and all the pharmacies on line... no one carries it in the USA!..." + (show)
@america

I tried amazon and all the pharmacies on line... no one carries it in the USA! I’m not sure how to get. Thanks Rita

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@america...when you go to Amazon put “strepsils lozenges” in the search box and they should be displayed. Hope that helps. Yaggi 01

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america | @america | Jan 24, 2019
In reply to @lindam272 "@america - I just Googled the name when I couldn't find on Amazon. You will see..." + (show)
@lindam272

@america - I just Googled the name when I couldn't find on Amazon. You will see options for ordering when you do that. Let me know if you still don't and I'll try again. I've never ordered but wanted to have the info for if/when needed. Linda

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Thanks much! I try again. Rita

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pamelasc | @pamelasc1 | Jan 25, 2019
In reply to @nick52 "@pamelasc1 Dear Pamela, I am glad to hear from you. ! At the beginning I took..." + (show)
@nick52

@pamelasc1

Dear Pamela,
I am glad to hear from you. ! At the beginning I took as prescribe for a full month then 2 to 3 times a week for another month then I went with 1 to two twice a week for another month. After I was taking some when I felt a little change with my respiration or when I had more mucus. I still do the same but I do not take it every day anymore. If you can take only the powder without the pills that I have no idea. I suggest you call the number I gave you for a proper answer.
Love Nicole

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Thanks so much for this info on taking Clear Lungs. I did call the company and they said it was fine to mix the powder in yogurt or applesauce, so I have done that. I will hope I see a difference soon! Best to you, Pamela

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jammer | @jammer | Jan 25, 2019

I have just been told I have Mycobacterium Gordonae anyone have this that can share their journey

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1 reply
yaggi01 | @yaggi01 | Jan 25, 2019
In reply to @irene5 "@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but..." + (show)
@irene5

@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but when we lived in Tennessee (Clarksville) I was seen at Vanderbilt and thought the ID doctor I saw there was thorough, knowledgeable, and kind. I’m sure the Mayo in Jacksonville is exemplary as well. (irene5)

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@irene5 Hi, yes would you mind to share the name of any docs in Nashville who treated you for your condition. We live close to Clarksville but use Nashville doc’s for most of our care. Thanks for sharing, Yaggi01

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