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.

america | @america | Feb 2, 2019
In reply to @flib "@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most..." + (show)
@flib

@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most energy I've had in a long time. Thank you. This has given me some hope. I'm taking 2 pills every 4 hours. I tried to find the one with the relieve congestion on the label; couldn't. I'll call the company tomorrow. Feeling happy today! Flib

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This is my fourth day with Clear Lungs also!!! It is amazing how much it helps with mucus. I can’t swallow the capsules so I break it open and drop it water and it works. Thanks for the information guys!!!

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Tina Sims | @tinaesims | Feb 2, 2019
In reply to @heathert "Hi all. I was just reading about biofilm and bacteria and the place for phages. I..." + (show)
@heathert

Hi all. I was just reading about biofilm and bacteria and the place for phages. I know of a gentleman whose dr is looking into it for him and another who it worked for, very interesting .juhttps://www.microbiologyresearch.org/docserver/fulltext/micro/130/8/mic-130-8-2059.pdf?expires=1549056187&id=id&accname=guest&checksum=B3C5CF9F284CD61FC5CEAE6747F47B8Dst Lets hope this becomes a treatment.

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I'm not sure why but I can't get the study to come up on my computer.

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Brenda R. | @brigby | Feb 2, 2019
In reply to @unicorn "Hi Connie, I am curious, how old are you? I took the pills at 67-8 and..." + (show)
@unicorn

Hi Connie, I am curious, how old are you? I took the pills at 67-8 and they killed me. At first no side affects(one year) but then they all started piling on. I eat organic, work out, am fit but the azithromyacin wiped out bowels,(severe cramping, many bathroom trips, weakness) hearing, (tinnitus) eyesight, (glaucoma) etc. Now I am dealing with the fallout. The mac does get a little worse each year and little harder to breathe, and yes, fatigue, but still moving along, cruises, family gatherings, exercise. My main thing of course is not to get sick...Anyway, I regret taking the pills and am hoping something else comes down the pipe, an inhalant, etc. This is a brutal pill regime. I think you can do it if you are younger. Thanks xo hope to all of us!

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@unicorn thanks for your honesty. I may have to decide soon whether to start the 3 pill regimen or not, and my gut is sensitive anyway. I’m 57. Waiting for culture results.... and praying.

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1 reply
tdrell | @tdrell | Feb 2, 2019

@heathert....wasn't the article from bacteriology from1984?? tdrell

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1 reply
ConnieW. | @conniewright | Feb 2, 2019
In reply to @unicorn "Hi Connie, I am curious, how old are you? I took the pills at 67-8 and..." + (show)
@unicorn

Hi Connie, I am curious, how old are you? I took the pills at 67-8 and they killed me. At first no side affects(one year) but then they all started piling on. I eat organic, work out, am fit but the azithromyacin wiped out bowels,(severe cramping, many bathroom trips, weakness) hearing, (tinnitus) eyesight, (glaucoma) etc. Now I am dealing with the fallout. The mac does get a little worse each year and little harder to breathe, and yes, fatigue, but still moving along, cruises, family gatherings, exercise. My main thing of course is not to get sick...Anyway, I regret taking the pills and am hoping something else comes down the pipe, an inhalant, etc. This is a brutal pill regime. I think you can do it if you are younger. Thanks xo hope to all of us!

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I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

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2 replies
tdrell | @tdrell | Feb 2, 2019

@conniewright.....if you want to hear and see the surgery you would have as well as see and hear Dr Mitchell....got to you tube to John MItchell MD "when Antiotics are not enough" I have heard and seen him speak at NJH NTM workshop...impressive....and also in the audience were a number of people he had done the surgery on....looking and feeling well....coincidently sat at lunch with some of them...they were living active lives and looked great. tdrell

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2 replies
heathert | @heathert | Feb 2, 2019
In reply to @tdrell "@heathert....wasn't the article from bacteriology from1984?? tdrell" + (show)
@tdrell

@heathert....wasn't the article from bacteriology from1984?? tdrell

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@tdrell oh woops was it, I typed in 2019. Will have to find something newer.

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bevmac | @bevmac | Feb 2, 2019
In reply to @conniewright "Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18..." + (show)
@conniewright

Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18 months two different times. I am an expert on taking the drugs by now. Going on them again. I have very few symptoms with my disease luckily except for fatigue. Here is my humble advise. When I went to the drugstore and first bought all those pills it was scary. I lined them up on my island and thought- okay guys, we're in this together and we're going to knock this thing. Attitude is everything I believe. I also gleaned advice off of these sites and it worked. I took Acidopholus probiotic everyday that I ordered online (patients swear by it) and a vaginal probiotic to prevent yeast. These drugs kill the good, bad and ugly. Your good bacteria need replacing. Always eat something in the morning before pills. If you go into this stressed, it will add to the side effects. Go into it determined!! The endorphins will mitigate it. I have had a happy life with MAC- travel, built at house, moved to another city, and still cook for all the holidays. Good luck!

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Thanks Connie - for your information. I am 75 years old - not so young - however a very young 75 year old. I like the advice to eat first before drugs. I have a doctor apart from my lung doctor who has a foot in both camps. She has decided to begin with colonoscopy which I have had. Now I am on high dose probiotic twice a day and a supplement called SAMe, which she believes mops up inflammation. I will take those supplements on every day I'm not on 3 antibiotics. I love reading and it is important to keep eyesight clear. I do have hearing aids, because of damage to my inner ear from a bad fall 10 years ago. I intensely dislike nausea (who does not). I'm also wondering about taking magnesium, which I always have, while on this regime. I have a life I love, enough friends and family for emotional support. Very aware I am embarking on an unknown journey.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 2, 2019
In reply to @tdrell "@conniewright.....if you want to hear and see the surgery you would have as well as see..." + (show)
@tdrell

@conniewright.....if you want to hear and see the surgery you would have as well as see and hear Dr Mitchell....got to you tube to John MItchell MD "when Antiotics are not enough" I have heard and seen him speak at NJH NTM workshop...impressive....and also in the audience were a number of people he had done the surgery on....looking and feeling well....coincidently sat at lunch with some of them...they were living active lives and looked great. tdrell

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@tdrell Thank you, Terri. That is very encouraging.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 2, 2019
In reply to @bevmac "I am new to this site. Just found it this morning. Two days from now I..." + (show)
@bevmac

I am new to this site. Just found it this morning. Two days from now I begin the 3 antibiotic routine - Monday Wednesday and Friday. I looked up on Google how people taking this medication manage. I'm not sure how to manage this mycobacterium page. My name is Bev and I live on the Gold Coast, near Brisbane Australia. It is wonderful to hear what other people with this issue have managed.

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@bevmac Hi Bev. Welcome to our site. You can click on my picture and read about my treatment plan. My plan works for me, but understand, it cannot work for everybody. It would depend on the sevetity of your disease, the specie of mac, and your suseptibility results. I hope you are taking the time to read over past posts and scroll through the topics in our discussion board. I am sorry that you have mac, but glad that you have joined our group. Let me know if I can help with any questions you may have. Are you able to navigate this site alright?

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