(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.

tdrell | @tdrell | Dec 30, 2016

In reply to @kaystrand "Group 1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco..." + (show)

Kay S...will think of you January 18....hopefully someone knows more re which probiotic is less expensive yet effective....I have it on my long list of questions for Dr Huitt at NJH.
If you have to have surgery for the cavity....ask if they can try the VAT method.
At the NTM workshop in September, I sat at lunch with two woman that had had lobes removed several years ago and said they were doing great! They looked great....said they exercised daily...had lots of energy etc

Good luck...Healthy NY 2017 terri D

tdrell | @tdrell | Dec 30, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

At the NJH september NTM workshop Dr Falkingham...renowned microbiologist and NTM expert .....told us that the national ( possibly international) microbiologists decided to try to come up with a way to track NTMS. So there is some hope that there will be a way to prove that NTM is a growing issue.......
Llistening to one of the NTM videos from NJH workshop 2016... a speaker mentioned a registry of NTM patients that is being assembled there....I will ask about it when I am ther January 5 to 13. TerriD

Elaine | @laneyk | Dec 30, 2016

In reply to @kaystrand "Group 1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco..." + (show)

I had cavitary MAC. Large area in Rt. Upper lobe. Took the 3 antibiotics for 14 months. I have been off the meds . for 4 months now and am doing well. Had chest x-ray 2 weeks ago. It looked as clear as it will probably get. My doctor said scarring present and no change from previous film before discontinuing meds. Waiting for sputum results. Dr. not expecting anything, but wants to be sure.

As far as the probiotics, when I first started treatment, I asked about the use of them and was told the 3 antibiotics for MAC, did not have the effect requiring the use of them. I did not take and have had no problems whatsoever.

After reading posts from others with this disease, I have felt so blessed to be as well as I am now. Was really ill at the beginning, but turn around began after about 4 months after treatment started. I have regained most of the weight I lost and do everything I need to. I think one adjusts to the meds after a while, but I did feel better after a month or so after discontinuation. There is certainly hope with this disease.

I hope my experience will help someone else with MAC.

david1952 | @david1952 | Dec 30, 2016

In reply to @kaystrand "Group 1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco..." + (show)

Thanks for the encouraging words. I have been on meds for 5 months and sputtum still testing positive for MAC ...

Kathryn S Wilbur | @kwilbur | Dec 30, 2016

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

cowboy1997 | @cowboy1997 | Dec 31, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Colleen my husband could not get this to work

Jamie Olson | @jamienolson | Dec 31, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

@cowboy1997, maybe this takes some time before the email change takes effect? I will check into it and let you know.

boomerexpert | @boomerexpert | Dec 31, 2016

In reply to @marier "hi my name is marie i also have mac and am looking for help i live..." + (show)

That would be the place to do it, for sure! Sorry it took so long for them to figure it out, but better late... Would you mind posting this on our advocacy stream as well?

Rosemary, Volunteer Mentor | @rosemarya | Dec 31, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

@cowboy1997, I once had a difficult time changing my settings. Then I realized that I was logged into Connect on 2 different devices. I had to log off each before my new changes were accepted. Rosemary

Colleen Young, Connect Director | @colleenyoung | Dec 31, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Hi Cowboy, It should be a simple change, but obviously something isn't working as it should because now you're photo got messed up too. I have submitted the issue and it will be corrected shortly. Thanks for your patience.

Rosemary, you are correct that you have to logged out on all devices for changes to take effect. Thanks for pointing that out.

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