(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.

Sue, Volunteer Mentor | @sueinmn | Sep 12, 2020

In reply to @kathyhg "How may cups do you drink a day. To find it helpful?" + (show)

Usually two, sometimes just one. I find it helps loosening mucus and with shortness of breath. My husband drinks it too, but adds a bit of honey.
Sue

Sue, Volunteer Mentor | @sueinmn | Sep 12, 2020

In reply to @mrf5629 "Thank you Sue. Which do you think works better? The licorice root or the Breathe Easy?" + (show)

I don't use licorice root because the tea works for me & I get a much lower dose of licorice, so less concern about BP.
Sue

poodledoc | @poodledoc | Sep 12, 2020

In reply to @goddard "Unfortunately the dong quai in Clear Lungs has estrogenic properties, so those of us with estrogen..." + (show)

clpc, Thanks for posting. It appears dong quai will increase estrogenic effects. Any drug that does that will decrease testosterone as well. It was hard for me to locate that info on the MSKCC.org site. Here is a direct link: https://www.mskcc.org/cancer-care/integrative-medicine/herbs/dong-quai#field-herb-mechanism-of-action Bill

Granny | @goddard | Sep 12, 2020

In reply to @poodledoc "clpc, Thanks for posting. It appears dong quai will increase estrogenic effects. Any drug that does..." + (show)

I've used the site for years. I'm a patient at MSKCC, but anyone can use it. The one on the internet has amazing depth of information. You can drill down and find every ncbi peer reviewed medical article if you want, or can get just a short summary of effects. The site always addresses how the herb relates to cancer, but also all other med conditions. I just downloaded the app for my phone yesterday (also Free). mmmmIm not sure it is as in depth as the site online you found. Example of how useful it is-----My daughter.-in-law and I were together and she was drinking an herbal tea Ashwatanga (sp?) and offered me some, so I looked it up first on the MSKCC site and it said do not combine with anesthetics---I was just coming out of ( a couple hours later) general anesthesia from my SuperD Navigation Bronchoscopy. Thank goodness for that warning. . In addition. she was then having problems with her pregnancy, and lo behold the site said that tea is known to cause spontaneous abortion. I was bummed after reading all the good reviews on Clear Lungs that I couldnt take it because I had ER/PR tumor-- but better to know. MSKCC actually also has a Chinese med pharmacy at one of their campuses.

Beth Kiefer | @mrf5629 | Sep 13, 2020

Can someone tell me whether the Breathe East tea referred to is the brand called Traditional Nedicinals? Tough night so surfing for products!

Terri Martin, Volunteer Mentor | @windwalker | Sep 13, 2020

In reply to @mrf5629 "Can someone tell me whether the Breathe East tea referred to is the brand called Traditional..." + (show)

Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had a tough night. I think we can all relate to that. Was there a specific symptom that kept you awake?

Beth Kiefer | @mrf5629 | Sep 13, 2020

In reply to @windwalker "Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had..." + (show)

Thank yoy!

anniepie | @anniepie | Oct 14, 2020

In reply to @windwalker "Yes, Beth, the tea is made by Traditional Medicines. I am so sorry that you had..." + (show)

Dear friends, can somebody help me with advice ?
Unfortunately I had to stop all my TB meds today. I've developed rapidly worsening Long QT (now in the 'severe' range) and Hypokalemia from the Azithromycin and Clofazimine.
I tried so hard to be a very compliant patient over the past 2 years, but have to stop now even though I still haven't got rid of the MAI. I just can't seem to make it to the finish line!
Has anyone else gone through this ? Do you have any advice for me ?
This site has been quiet for a while, but I think of you all, and I hope somebody can help me and all of us
Anniepie x

irene5 Irene Estes | @irene5 | Oct 14, 2020

In reply to @anniepie "Dear friends, can somebody help me with advice ? Unfortunately I had to stop all my..." + (show)

@anniepie I am so sorry you are dealing with these other health issues arising from the meds. That is a problem with MAC/MAI. It is difficult to get rid of for many of us, and the drugs to accomplish that are harsh. The suggestion I will make is to talk to your ID doctor about Arikayce. It is inhaled and, therefore, goes directly to your lungs. It is for people like you and others who have not responded to conventional treatment or can’t tolerate the other meds alone. It is worth asking about. irene5

alleycatkate | @alleycatkate | Oct 14, 2020

@anniepie What a difficult path many are on with lung infection. I have no suggestions but hope you are able to find a solution. Good luck to you. Kate