(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.

@irene5

@janrn1 Arikayce is an inhaled liposome suspension of amikacin. Amikacin is an antibiotic that has been around for quite some time. When you inhale Arikayce, the liposomes containing the medicine travel into your lungs. Once inside your lungs, they release the medicine to fight MAC/MAI. It is a different yet effective way to fight the disease. Arikayce is in a phase three clinical trial. It is an FDA approved treatment plan in patients who did not respond to a combination antibacterial drug treatment alone. I have been on this med along with two of the Big 3 since June. irene5

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Did you ever have a physician who did not want to treat the MAC?

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Are you aware of any issues for people who are on blood thinners (even ASA 81 mg)?

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Oops - my message above was related to Breathe Easy Tea and blood thinners

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@anniepie

Thanks Terri and thanks so much everyone else.

Yes I will try to get onto Arikayce -- that was planned anyway for a few months time. But I think I will have to take something else as well.
I might go back on the Ethambutol. (Still scared a bit every time I take it. But the heart problems that happened with the Macrolides -- Azithromycin and Clarithromycin -- and with Clofazimine freaked me out).

Has anyone ever tried Bedaquiline??? It's a TB drug but in more recent studies it appears also to work with MAC and with Intracellulare in particular.

You're all so kind -- I can't thank you all enough for being there for me.
Virtual hugs, Annie x

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Hi Anniepie. Please keep me posted on what you decide for treatment. Sending you hugs too!

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@janrn1

Did you ever have a physician who did not want to treat the MAC?

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@janrn1 There are physicians who do not want to treat MAC. Generally, they are pulmonologists. There is a “wait and see” attitude especially if a patient does not present with symptoms. MAC is slow growing so “ time is on my ( your) side” as the song goes. It also depends on what state you live in. In Connecticut where I live most of the time and was first diagnosed, there was originally a “wait and see” opinion. I was good with that. In Tennessee the attitude is mostly plain and simple- “ We treat.” My experience has been ID doctors in any state believe in treating right away because waiting a few years can be problematic as MAC generally worsens without treatment. To treat or not to treat - that is the question! By the time you have grappled with that long enough, weighed the pros and cons, most patients accept that treatment is necessary. irene5

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@kathyhg

Are you aware of any issues for people who are on blood thinners (even ASA 81 mg)?

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My husband has not had issues with the tea & his daily aspirin. Here is a link to the tea package with ingredients & amounts listed. https://www.traditionalmedicinals.com/products/breathe-easy/ As with any herbal preparation, if you are taking prescribed medications, it would be a good idea to talk to your doctor, or even better, your pharmacist if you have concerns.
Sue

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Thanks for the information; I’ll check with the pharmacist next time I go in.

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@janrn1

Did you ever have a physician who did not want to treat the MAC?

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A number of people in this group have not been treated for their MAC with antibiotics. My pulmonologist says she never treats MAC based on sputum cultures alone - she looks for infection evidence in the lungs plus other symptoms (coughing, fatigue, weight loss), before beginning treatment. She also considers the total physical condition of each person, because not everyone can tolerate the 3 antibiotic regimen. I also see that you have COPD, which may affect how you would be treated.
Right now, I (probably) still have the infection, but no symptoms. In consultation with my 3 docs, we stopped the antibiotics last December based on an improved lung scan, even though the cultures were positive. I have maintained all year with 7% saline nebs & airway clearance. The Infectious Disease doc consulted with NJH before stopping. He said that, in his experience, a fair number of people have MAC for years, and you can "knock down" the level of infection with drugs, but it never really goes away. The best you can do is healthy eating/living and good lung hygiene. Sometimes it flares up and you treat it again.
Sue

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@papillion

Breathe easy tea have any side effects.

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Hello Papillion. I have been using Breathe Easy tea for over 10 yrs. It has been helpful with opening airways and relieving that tight feeling in my chest and no side effects. Like Sue had mentioned; the amount of licorice root in it is not enough to cause adverse effects. If I remember correctly; too much licorice can negate high blood pressure meds. Let us know if you decide to try it and tell us if it helped you. I chaired a Better Breather's meeting once for The American Lung Association, and took a box of Breathe Easy tea. We had a pot of hot water brewing in the room and each person there got to have a cup of this tea. The response was overwhelming. Many there stated that they felt some relief after drinking it and were grateful to learn about it.

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@ckscoville

I'm getting pretty discouraged, and my coughing episodes have frequently been very painful. I'm due to see my Infectious Disease doctor at Mayo again in mid-September, but so far there doesn't seem to be a lot of experience with an Achromobacter infection as best I can tell. Personal opinion: it's making my Bronchiectasis worse.

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Hello CKSCoville - I had an Achromobacter infection back in June. Had never heard of it and nor had anyone else in the Mayo group. I was given the drug Sulfamethoxazole for 14 days and that cleared up what had been a very bad and productive cough. I have MAC, bronchiectasis, and have had pseudemonas several times. Hope this helps, Pamela

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