(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

@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 I am familiar with some of those ingridients. The Natrum Sulphuricum is the base of many lung related antibiotics. Some naturapaths with use it in it’s purist plant form.(Dr. Andrew Weil). I have used Skullcap along with Mullien leaf. That is what Indians have used for hundreds of years as did the settlers. The Dog Quai root is supposed to be super good. Because I have had good success with Chinese accupuncturists in the past recommending these types of remedies; I totally support it. Thanks!

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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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Super Windwalker! 

I am now taking probiotic by Dr Ohhira from OkayAma University in JAPAN 

Have you taken probiotics. These are vegetarian formula

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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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Dear Windwalker,

I do not have a clinic around here neither. It is in Moncton NEw Brunswick which is 4 h from home. It was worth it.  Does your specialist perform broncoscopy for you? 

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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

Liked by tdrell

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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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Lindam272….thanks for posting this…I hope they will tape…we leave tomorrow and will be heading East driving while this is occurring tdrell

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@lindam272 Thanks for the information, Linda. We are out in Wyoming on vacation and won’t be able to register for this event. Hopefully some of the people are able to listen in and report back to the rest of us who cannot attend.

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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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Hi all,
Please see @128128terry11t‘s summary of the webinar here:
– Participant summary of NTM webinar 9/14 with Dr. Kevin Fennelly https://connect.mayoclinic.org/discussion/webinar-914/

Terry wrote the summary while it was still fresh in her mind. She will also post a link to the archived video when it is available. Thanks Terry!

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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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@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’m not with kaiser but my parents are and some doctor they like and others they don’t. They simply request another Dr. until they find one they are happy with. Don’t be afraid to ask for another pulmonologist. We are in the Los Angeles area but the same policy should apply. I would learn all you can so that you can ask all the questions you need. I also was diagnosed with MAC in 2009. I also could not handle rimfampin so i only took the other 2 (cyrithermyacin and ethembutol) I have been negative to MAC for 1.5 yrs so I’ve been taken off all antibiotics. it’s been a month so far and I feel fine, except I have bronchietasis. This is a long process but your husband will get through it and learn to manage the broncheitasis. Make sure he gets a flu, and pnemonia shot, try and avoid catching colds, don’t wear yourself out, take immune boosting vitamins. Ask for CT scan at least 1 a yr.

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@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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Hi the eye doctor took me off ethambutol yesteeds because it started to affect my vision. I have been on the big 3 approximately 1 year and 3 months. I feel really good…..

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@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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Hello Shelby,
I’m not sure what cyrithermyacin is? Did you mean Erythromycin or azithromycin? My husband has been prescribed Ethambutol, Rifabutin (big problems with that one), and Azithromycin. I’m glad you’re feeling better.
-Joan

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@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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Shelby, What was the dosage and how often did you take the two drugs?

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I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@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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