(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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i think Clarithromycin in in the same family as the other “romycins”

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I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@auntnanny
Hi Jan,
I just got treated for pseudomonas. The treatment was tobramyacin nebulized two times a day for two weeks. They also use Ciproflaxacin for it or levaquin which is oral medication for two weeks. I don’t take the oral ones because our reacting to them so they always give me tobramyacin nebulized. They told me the only other choice was iv medications for it. I have done the iv medications once for it 8 years ago. I had an extremely bad case and did not have a pulminologist yet to do a sputum test so by the time I got to a pulminologist I was in pretty bad shape and needed to do two iv’s on myself a day for two weeks.
Anyway I probably had pseudomonas 8 times since I have been seen by a pulminologist.
Anyway hope this helps Jan!

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@pfists…….. thanks so much for your note. It was quite encouraging and I’m hoping I get started on something this week. I’ve faxed my sputum test results to Mayo’s so I should hear from them tomorrow (hopefully). thanks again for writing

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@auntnanny
Good Jan …I’m sure they will get you started on something soon and you’ll feel better!
Shari

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pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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@ginak

Hi all, I haven’t been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I’m still connected.
Thanks
Gina K

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@nick52, Yes, I do take probiotics capsules some times. I eat yogurt and drink Kefir milk. Are you familiar that? The Kefir has many kinds of live cultures in it.

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@ginak

Hi all, I haven’t been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I’m still connected.
Thanks
Gina K

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@nick52, hello! I got a bronchoscopy in 2005 when I was initially diagnosed with MAC. I have not had one since then. My doctor is able to test for active infection with sputem tests. I have had a CT scan in 2013 that confirmed bronchiecstasis, and now I get annual chest x-rays.

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@ginak

Hi all, I haven’t been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I’m still connected.
Thanks
Gina K

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@nick52, have you had a bronchoscopy?

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@pfists Shari, OMG, 8 times with pseudomonas! Are you kidding me? Could you maybe be re-infecting yourself from something in your immediate environment?

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@kaystrand Great questions for @tdrell to take to NJH for the seminar.

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@lindam272

If anyone is interested, here is the information on a webinar taking place tomorrow that addresses the practical points of NTM:

Nontuberculous Mycobacteria – Practical Points

As part of NTM Lung Week at the ATS, and in conjunction with PAR partner, NTM Info & Research, the American Thoracic Society presents a live webinar on Thursday, September 14th, 2017 at 2:00 p.m. ET titled “Nontuberculous Mycobacteria – Practical Points.”

Register Now!

We are so fortunate to have Kevin Fennelly, MD, MPH, of the National Heart, Lung & Blood Institute (NHLBI) presenting this year. If you are a patient, family member, caregiver, physician or researcher, please don’t miss this informative webinar.

Click on this link to register for the webinar:
https://attendee.gotowebinar.com/register/5428471810444967170
After registering, you will receive a confirmation email containing information about joining the webinar.
View System Requirements

Linda M

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@tdrell Hi It seems that pseudonomous is part and parcel of MAC quite often, I would like to ask the confrence if that is so and if MAC patients should have sputum checked often for pseud and other nasties, even if they do not have MAC colonising at the moment. Thanks Terri, Heather 🙂

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