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

Kzr4ua.....welcome to our great support group....within a fewvweeks ...when she returns from vacation.....you will be greeted bynour mentor Kate.
Sounds like you have really been thru alot! But diligent about keeping up with your care and getting informed about our mutual enemy...NTM.
The videos from National Jewish Health from 2015 and 2016 Are great....
I will see DR Huitt at NJH starting on January 5th ....I applied to be a patient there in August. I was diagnosed in July with MAC after a bronchoscopy here in Wisconsin where I LIve. My only symptoms for 2 years had been a daily evening cough and thick white mucus. It took the two years to find the reason.the only good part to getting the diagnosis was that the two year mystery was solved.
I am not on treatment....wanted Dr Huitt to evaluate.tDrell

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)

Windwalker....do you think it SEEMS like,more are getting NTM but actually the doctors are learning to look for it? Tdrell

Kay Strand | @kaystrand | Dec 30, 2016

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

Tdrell
YES, it seems many more MAC cases. But, maybe it is just more diagnosed now. Maybe it will get more research attention. It's a shame there is no way it is tracked. Or is there?
Thanks
Kay S

irene5 Irene Estes | @irene5 | Dec 30, 2016

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

As far as I have been told, it is not legally mandatory to report cases of MAC to the CDC like it is with TB. They have flagged my case in case it comes to that because I made six trips to China and have two Chinese children who were treated with Isoniazid due to positive PPD. I am certain my MAC has nothing to do with that. Positive PPD among international adoptees has to do more with BCG and being given a live virus instead of inactive virus like in the US. If MAC cases had to be documented, I believe things would change for us in terms of treatment. Irene

Terri Martin, Volunteer Mentor | @windwalker | Dec 30, 2016

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

Hmmm, that is interesting.

Terri Martin, Volunteer Mentor | @windwalker | Dec 30, 2016

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

Happy New Year! Tdrell, I do not know the answer to that. I wish all that do get this would be treated at a non-profit learning institution like Mayo, John Hopkins, etc. That way data could be collected. -Terri

Terri Martin, Volunteer Mentor | @windwalker | Dec 30, 2016

In reply to @maryjo2sell "Hello. My name is Mary Jo. I am new to the forum. I only discovered you..." + (show)

Hello bboxer, I too love the Mayo clinic. Will be headed there myself Jan 7. Take care -Terri

boomerexpert | @boomerexpert | Dec 30, 2016

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

Indeed there is no mandatory reporting requirement for MAC as there is for TB or HIV, as they are communicable (person to person), MAC and all other NTM's are not. The idea of giving them a mandatory reporting designation could be a double-edged sword: on one side, the real number of infections would be known which would help dollars flow to research on treatments/cure; on the other side, unless designed accordingly, it could compel folks who are asymptomatic to get treatment (as is currently the case with TB) which of course is not desirable...the US DHHS would be the determinor of reporting status and requirements therein.

Kay Strand | @kaystrand | Dec 30, 2016

Group
1-I am going broke buying my $50 per month Probiotic. Does anyone have a reco for a Probiotic that's come from a doc or someone in the know? This was is 90 mill whatever is in probiotics. Would be very grateful for advise on this.

2- I go back to Mayo Rochester on January 18th. I've had 2 clear sputum cultures but have read that doesn't mean much? I have ANOTHER CT scan on that date. If I still have a cavity, and my lungs look ok for it, I see a surgeon. Anyone out there had surgery for MAC? Anyone with cavitary MAC? I'm a little apprehensive about this appointment!

3- Happy New Year all. Glad I found you. It's a crazy way to meet nice people, but it's good we are here for each other. You've all helped me immensely.

Best
Kay S

boomerexpert | @boomerexpert | Dec 30, 2016

I can help with #1: I get my probiotics at Earth Origins which is I think the best of our local natural food markets. Work just fine at far less cost.
I'm glad we have each other, too, and happy, healthy, and fulfilling 2017 to you as well...and to all!

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