1. < MAC & Bronchiectasis

(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.

nick52 | @nick52 | Apr 20, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@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 my doctor said that sputum is not accurate for a diagnostic. You may want to double check that.  We live in Largo Fl.  Is this far from you? Nick!

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nick52 | @nick52 | Apr 20, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@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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@sophie 1019 you bought clear lung the blue or the red bottle?  What is it you want to take it for?  I use ClearLung! Nick

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Suzie2017 | @suzie2017 | Apr 21, 2018
In reply to @sophie1019 "At first I had two large cavities. With the meds, the oNE cavity went away, the..." + (show)
@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

We have not heard from our doctor as of yet. If I don’t hear from him by Monday, I will call and set up an appointment. I read on line that blood and urine tests will also be ordered. We live in Sebring, FL

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Jennifer | @megan123 | Apr 21, 2018
In reply to @joan912 "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..." + (show)
@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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Sorry to interrupt... this is new information about swimming in outdoor pools as well. Eighty percent is harbouring Mac...it makes sense but is this some new information. I remember when it was just indoor pools. I am now on the big 3 so I will avoid pools. Can u tell me where you got this information..

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nick52 | @nick52 | Apr 22, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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To all  I have a question? What was your symptoms when the doctor told you you have a MAC in your lung?  

Is anyone tried Dr Ohirrah’s probiotics?

Nick

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nick52 | @nick52 | Apr 22, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@jengelage did you received my response regarding your question about alternative Med.?

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Suzie2017 | @suzie2017 | Apr 22, 2018
In reply to @tdrell "Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but..." + (show)
@tdrell

Suzie2017 20 years ago I had pain in left groin, thought it was an inguinal hernia....but eventually found out the pain was due to osteoarthritis in the left hip.tdrell

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The hip is a possibility but my husband does not have any pain when he walks. The groin pain comes and goes as well as back pain in the middle of his back. I wonder if it could be the Mac infection spreading. He had his groin x-rayed and nothing showed up about 3 months ago. We hope to see his doctor his week.

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joan912 | @joan912 | Apr 22, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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My husband had extreme night sweats, low-grade fever, and extreme fatigue. He had it for months before his sputum came back positive for MAC. Previous physicians didn't do any follow-up tests, though he had the same complaints. Once the sputum came back positive, they finally diagnosed it.

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Suzie2017 | @suzie2017 | Apr 22, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Is your husband now on the antibiotic treatment? If so, I hope he is doing better. My husband has only few of the symptoms of Mac, he has weight loss of 18 pounds over the past 2 years and he struggles with fatigue. He has never had night sweats. Did the physicians do any other tests on your husband? We hope to see the doctor this week.

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joan912 | @joan912 | Apr 22, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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He was prescribed the big 3, but found he generally couldn't take them. He had CT tests which showed mild bronchiectasis in both lobes. We are actually traveling to Mayo Clinic in Rochester tomorrow to see Dr. Aksamit on Tuesday. I hope they will be able to come up with alternative therapies.

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