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.

papillion | @papillion | Oct 16, 2020
In reply to @windwalker "Hello Papillion. I have been using Breathe Easy tea for over 10 yrs. It has been..." + (show)
@windwalker

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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Thank you. I will try it

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tdrell | @tdrell | Oct 16, 2020
In reply to @sueinmn "A number of people in this group have not been treated for their MAC with antibiotics...." + (show)
@sueinmn

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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@janrn1 when l was evaluated at NJH 3 plus years ago.....they said to treat they would want 2 positive sputum cultures....l had one from a bronchoscopy and remainder were negative after 2 months....and bronchiectasis on my CAT scan...did not show any. also ...l am adding this...did not have weight loss....fevers...chills. So they felt the MAC that was found was from aspiration into lungs from water source here in SE wisconsin where we are one of the hot beds for NTM according to the AMerican Thoracic Society.
i go every there every year for evaluation...
the Local ID was all set then to start me on the 3 antibiotics based on one culture nothing else. tdrell

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judyhodgern | @judyhodgern | Oct 16, 2020
In reply to @windwalker "Hello Papillion. I have been using Breathe Easy tea for over 10 yrs. It has been..." + (show)
@windwalker

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.

Jump to this post

I’m sorry I may have missed it but where do you get the breeze easy tea?

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kathyhg | @kathyhg | Oct 16, 2020

Another question about the breathe easy tea - does it do the same thing as curcumin does? I started taking curcumin after reading about it here and consulting with a naturopath but I would rather drink the tea if they do the same thing.
Thanks in advance!

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1 reply
heathert | @heathert | Oct 16, 2020
In reply to @anniepie "Thanks Terri and thanks so much everyone else. Yes I will try to get onto Arikayce..." + (show)
@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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@anniepie that Bedaquiline sounds interesting for Intracellulare, its so difficult if you have problems with the big 3 so would be great if that one worked. Take care Heather

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1 reply
janrn1 | @janrn1 | Oct 16, 2020
In reply to @janrn1 "Did you ever have a physician who did not want to treat the MAC?" + (show)
@janrn1

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

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I would love it if someone would answer the above question. If you did get treated how did the Dr.s change their minds?

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1 reply
irene5 Irene Estes | @irene5 | Oct 16, 2020
In reply to @janrn1 "I would love it if someone would answer the above question. If you did get treated..." + (show)
@janrn1

I would love it if someone would answer the above question. If you did get treated how did the Dr.s change their minds?

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@janrn1 The decision to treat by a doctor who previously didn’t want to treat is based on a progressively worsening image on CT scan and an increase in some somatic symptoms (cough, chills, fever, fatigue and/or weight loss.) A worsening of a patient’s quality of life is a reason to treat. Many patients talk about their life “before” MAC as compared to their life “after” a MAC diagnosis. For example, I used to be a total type A personality before MAC and the Ever- ready Bunny with boundless energy. That person moved out when MAC moved in. There are lots of factors a physician will consider since treatment is often grueling. I am confident and hopeful that the treatment I am doing will kill the MAC. There is not a “one size fits all” as Terri, our mentor has suggested many times. irene5

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 17, 2020
In reply to @kathyhg "Another question about the breathe easy tea - does it do the same thing as curcumin..." + (show)
@kathyhg

Another question about the breathe easy tea - does it do the same thing as curcumin does? I started taking curcumin after reading about it here and consulting with a naturopath but I would rather drink the tea if they do the same thing.
Thanks in advance!

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Kathyhg, I think you will have better and immediate results with the tea. Curcumin is an anti-inflammatory that may reduce inflammation almost anywhere in your body. The tea has herbals and licorice root that target the airways. The tea is is under $4.00 a box and certainly worth a try.

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1 reply
papillion | @papillion | Oct 17, 2020
In reply to @windwalker "Kathyhg, I think you will have better and immediate results with the tea. Curcumin is an..." + (show)
@windwalker

Kathyhg, I think you will have better and immediate results with the tea. Curcumin is an anti-inflammatory that may reduce inflammation almost anywhere in your body. The tea has herbals and licorice root that target the airways. The tea is is under $4.00 a box and certainly worth a try.

Jump to this post

Thank you

REPLY
anniepie | @anniepie | Oct 23, 2020
In reply to @heathert "@anniepie that Bedaquiline sounds interesting for Intracellulare, its so difficult if you have problems with the..." + (show)
@heathert

@anniepie that Bedaquiline sounds interesting for Intracellulare, its so difficult if you have problems with the big 3 so would be great if that one worked. Take care Heather

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Thanks @heathert. I don't know what drug alternatives my thoracic specialist will come up with -- we'll see. (As it turns out, unfortunately many TB drugs can cause Long QT problems with the heart, but it is rare). I will keep you posted on what happens, Hugs to you x

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