(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

@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Also, do you know who uses Clear Lungs and how is it working? I just bought some.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@suzie2017 the results may not be in yet for mac diagnosis, it takes 6-8 weeks for that to grow. It is only mentioning what is known to be growing presently.

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OK. Thank you

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@suzie2017 I just googled ACID FAST BASCILLI PRESENT and one of the explanations is this: "Sputum, or phlegm, is often used to test for Mycobacterium tuberculosis, to find out if a patient has TB. This bacterium is completely acid-fast, which means the entire cell holds onto the dye. A positive test result from the acid-fast stain confirms the patient has TB". Because you husband does not have TB, it seems to suggest that they have found MAC, which is a non-TB Mycobacterium very similar to TB mycobacterium. I suspect some medical facilities are using the same technique to testing both. I'm not a medical person. So this is just my personal understanding from reading up on the internet. You might want to spend sometime using google to find more information.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Does it have Licorice root

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Thank you ling123. I am under the same impression that this is a definite diagnosis of Mac since it is the second phlem culture indicating MAC. We have not heard from the Pulmonologist as of yet.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@ling123, thank you for looking that up Ling.

Liked by ling123

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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@sophie1019 Yes, @nick52 she is a staunch believer and user of this product. I use a tea with some of the same ingredients as Clear Lung, called Breathe Easy by Traditional Medicines. Can find it at Krogers in the Natural/organic aisle. They both contain licorice root which helps to open airways.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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Hi @suzie2017 That usually means MAC, at least it did in my sputum culture. They should now send it to National Jewish or some other such center for susceptibility testing. Meaning which antibiotics will/won't work to treat it. Best to you and your husband.

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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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@tutti , Lisa, I don't know how this old post escaped me. Hopefully you got your answer somewhere. In case you didn't: As a general precaution we with mac are advised to avoid indoor/outdoor pools. 80% of pools tested come nack possitive for various strains of mac. They have found that mac is morphing into a strain that resists chlorine now. Because you are more suseptable to the more serious strain, abscessus, you may want to use extra caution.

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@suttonmac2009

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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@suttonmac2009 , Hi there. I was just reading over older comments and came across yours. I was wondering, were you on the clarithromycin and ethembutol for the full five yrs? Did you take any other meds with those in the beginning?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

@jkiemen If you are asking about Clear Lung, yes, it has licorice root in it.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

Thank you Jen. We are waiting to hear from the Pulmonologist.

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@suttonmac2009

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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You were on these antibiotics for 5 years? Wow! Did you experience an side effects?

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

Jump to this post

@suzie2017 does your husband has back problem ?

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