(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

Thanks @jkiemen this sounds very promising, 6 weeks is fab compared to 4 years os nasty pills! 15000 phages will take a while to sort which is for which bug, they need more staff and the money that goes along with that.

Liked by anniepie

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@auntnanny

sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but that it takes a few months. They recommended (to me) 4 weeks on and 4 weeks off. Then repeat for several months. Windwalker on this site has used it successfully and I'm trying. It is an inhaled antibiotic that goes directly to the lungs and I believe one bacteria it targets is pseudomonas (which I have). They asked me to use a different dispensing cup from the one that usually comes on a nebulizer. This one breaks it down into a fine mist. I believe it is available (not costly) on Amazon and I'll get the name of it if you are interested. I told Mayo Doctor I had been on this two weeks and was still coughing and he assured me that we needed to stay longer. Two weeks would not take care of it. I just hope he's right. Perhaps Windwalker will come on and help you more with this product. I believe she said after using it she was cough free for a couple of years. Sounds like heaven to me. I believe tobramycin is an older antibiotic but the new way of getting it into your lungs seems to be what they feel is so important. I hope this is helpful to you in some way. Windwalker is also with Mayos (Florida) and I'm with them in Minnesota so I believe it is what they are recommending.

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auntnanny. I am going to make an appt with the Mayo in Rochester. I remember that you told me which doctors that you saw there. I will be coming from Rhode Island and will also need a hotel for my son and me. Any recommendations that you could give me regarding specialists and hotels in the area would be much appreciated. I just had a car scan yesterday and my Mac has progressed much more than was anticipated. The coughing and sleep apnea have put a great strain on my heart and afib condition. I am getting very weak and exhausted.

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@sounder27

auntnanny. I am going to make an appt with the Mayo in Rochester. I remember that you told me which doctors that you saw there. I will be coming from Rhode Island and will also need a hotel for my son and me. Any recommendations that you could give me regarding specialists and hotels in the area would be much appreciated. I just had a car scan yesterday and my Mac has progressed much more than was anticipated. The coughing and sleep apnea have put a great strain on my heart and afib condition. I am getting very weak and exhausted.

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sounder 27 Dr. Teng Moua is my doctor there and he's very kind — if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn — they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And…. if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's — the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

Liked by anniepie

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@auntnanny

sounder 27 Dr. Teng Moua is my doctor there and he's very kind — if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn — they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And…. if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's — the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

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sounder 27 ……. when you call, tell whomever answers the phone that you need help immediately. All doctors there are wonderful. If you can get in quicker with another, I wouldn't hesitate.

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@auntnanny

sounder 27 Dr. Teng Moua is my doctor there and he's very kind — if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn — they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And…. if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's — the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

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auntnanny. Thank you so very much. You have been incredibly helpful in easing my concerns. I do have difficulty with shortness of breath when walking any distance and I was worried about that. I will let you know my progress. It is very comforting to be able to share my concerns.

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@auntnanny

sounder 27 Dr. Teng Moua is my doctor there and he's very kind — if you look up pulmonologists on the Rochester list, you will see a photo and short biography about him. He will work hard to help you. I have preferred the Hilton Garden Inn — they have a shuttle car available all hours for you and will take you and pick you up whenever you need. You don't have to do any walking. And…. if you are having difficulty breathing or feel you can't do the walking inside the clinic, there are a number of nice gentlemen waiting with a wheel chair for you when the shuttle car drives up. If you have no one with you, one of the gentlemen will see that you are taken where you need to go. It's really run wonderfully well and I promise you will like it there. It's unbelievable. You will get some discount on rooms at Garden Inn if you say you are with Mayo's. Everyone there is with Mayo's — the whole town works around them. If you have any more questions I can answer, feel free to ask. I'm happy to tell everything I know about my experiences there.

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@auntnanny I just spoke to the intake people at Mayo in Rochester to set up an appt also. I will try the Hilton Garden Inn for a room when I go. Can you tell us how they do their consult visits. Did you have to do any tests there? How long did you have to stay?

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sounder27 ……. When I made my call to them for help, the lady taking my call asked me if I had any other issues — which I didn't, but….. I should think you might want to see a cardiologist while there. If I were you I would let her set up an appointment for both. You can always cancel if not needed but it isn't easy to decide you need something more while you're there. They take care of a lot of people. Just saying……

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@jkiemen

@auntnanny I just spoke to the intake people at Mayo in Rochester to set up an appt also. I will try the Hilton Garden Inn for a room when I go. Can you tell us how they do their consult visits. Did you have to do any tests there? How long did you have to stay?

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You should call Hilton Garden Inn as soon as you know when your appt is. I would make a reservation for an extra night just in case they want you to stay over for a test. It costs nothing to cancel. Everyone at Garden Inn is there for Mayo's and they never know for sure if they need one night — or two — or more. They fill up fast so do make the call. If you have a current cat scan, get it put on a disk and take it with you. They might ask for another and if so, you will love the people working in that area too. So very kind. Did you get Dr. Moua — or do you know that at this time? He will do his opinions and recommendations from the cat scan (I'm almost certain of that). I think you will just be there one night but do make a 2-night reservation — just in case.

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@auntnanny

You should call Hilton Garden Inn as soon as you know when your appt is. I would make a reservation for an extra night just in case they want you to stay over for a test. It costs nothing to cancel. Everyone at Garden Inn is there for Mayo's and they never know for sure if they need one night — or two — or more. They fill up fast so do make the call. If you have a current cat scan, get it put on a disk and take it with you. They might ask for another and if so, you will love the people working in that area too. So very kind. Did you get Dr. Moua — or do you know that at this time? He will do his opinions and recommendations from the cat scan (I'm almost certain of that). I think you will just be there one night but do make a 2-night reservation — just in case.

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sounder27 …….If your son is going, that's great. He will be able to push you where you need to go and you will find it all set up for wheel chairs. Just get one outside the front door (there's a huge area there where the shuttle car will let you off — the driver will see that you get a wheel chair if need by — just tell him and he'll motion one of the guys there with a chair for you. They will get you in it, adjust it and get you into the building. You have to do nothing. You don't pay for the wheel chair, of course.

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@auntnanny

You should call Hilton Garden Inn as soon as you know when your appt is. I would make a reservation for an extra night just in case they want you to stay over for a test. It costs nothing to cancel. Everyone at Garden Inn is there for Mayo's and they never know for sure if they need one night — or two — or more. They fill up fast so do make the call. If you have a current cat scan, get it put on a disk and take it with you. They might ask for another and if so, you will love the people working in that area too. So very kind. Did you get Dr. Moua — or do you know that at this time? He will do his opinions and recommendations from the cat scan (I'm almost certain of that). I think you will just be there one night but do make a 2-night reservation — just in case.

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jkiemen I'm sorry — I just thought was was corresponding with the first lady who just wrote asking about my experience with Mayo's. I didn't look closely enough to see you too are going to Mayo's. If I can answer anything at all, please ask. I think you will be more than happy with them.

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@sounder27

auntnanny. I am going to make an appt with the Mayo in Rochester. I remember that you told me which doctors that you saw there. I will be coming from Rhode Island and will also need a hotel for my son and me. Any recommendations that you could give me regarding specialists and hotels in the area would be much appreciated. I just had a car scan yesterday and my Mac has progressed much more than was anticipated. The coughing and sleep apnea have put a great strain on my heart and afib condition. I am getting very weak and exhausted.

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Hi @sounder27, Thanks for your private message. I am responding to you here so that others like @jkiemen can also benefit from the information and those who have been treated at Mayo Clinic Rochester can add to my information — although I don't think I can top all the great advice shared by @auntnanny! Who else has been to Mayo Rochester?

Mayo Clinic pulmonologists are part of an integrated team of highly specialized medical and surgical experts who work together. Whichever doctor you see benefits from the collective knowledge of the Mayo's MAC expertise. Here is the contact information for Mayo Clinic http://mayocl.in/1mtmR63

See the Visiting Mayo Clinic group for more helpful tips about hotels and staying in Rochester. There is a wealth of first-hand recommendations and experiences from members here:
– Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

You can also contact the Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

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@colleenyoung

Hi @sounder27, Thanks for your private message. I am responding to you here so that others like @jkiemen can also benefit from the information and those who have been treated at Mayo Clinic Rochester can add to my information — although I don't think I can top all the great advice shared by @auntnanny! Who else has been to Mayo Rochester?

Mayo Clinic pulmonologists are part of an integrated team of highly specialized medical and surgical experts who work together. Whichever doctor you see benefits from the collective knowledge of the Mayo's MAC expertise. Here is the contact information for Mayo Clinic http://mayocl.in/1mtmR63

See the Visiting Mayo Clinic group for more helpful tips about hotels and staying in Rochester. There is a wealth of first-hand recommendations and experiences from members here:
– Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

You can also contact the Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

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Thank you so very much. I appreciate your response and auntnannys as well.

Liked by anniepie

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I was diagnosed with Bronchiectasis about a month ago after 15 years of clearing my throat and bringing up sputum and being told it is just post nasal drip no worries. I was put on Amoxicillin for 14 days and Everything has gone away. No more clearing throat, cough, sputum, chest tightness. However I was waiting to see my dr for follow up to let him know that I still had a full pain when deep inhaling on left side. He called me yesterday to tell me that they discovered MAC and he is referring me to an infectious disease specialist and I will be on antibiotics for 6 months to a year. At first I thought no biggie until I read all the horror stories. I have none of the symptoms of MAC. No cough, fever, have never experienced fatigue, no diarrhea, no weight loss, I love food and very much enjoy eating, no night sweats, chills. I don’t get it. Your post made me feel better about the meds and side effects. When I was researching I thought if I am not experiencing any ill effects then why do I want to take something that will make me ill.

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I have been following this site for many months but this is my first time to respond. I have taken the big 3 for 2 years. It did clear up my MAC but it soon returned. My dr is now wanting to put me on the med Arikares. Has anyone taken this med? It seems to have a lot of side effects and I am not sure if that is the route I want to go? Anyone familiar with this?

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@wal6578

I was diagnosed with Bronchiectasis about a month ago after 15 years of clearing my throat and bringing up sputum and being told it is just post nasal drip no worries. I was put on Amoxicillin for 14 days and Everything has gone away. No more clearing throat, cough, sputum, chest tightness. However I was waiting to see my dr for follow up to let him know that I still had a full pain when deep inhaling on left side. He called me yesterday to tell me that they discovered MAC and he is referring me to an infectious disease specialist and I will be on antibiotics for 6 months to a year. At first I thought no biggie until I read all the horror stories. I have none of the symptoms of MAC. No cough, fever, have never experienced fatigue, no diarrhea, no weight loss, I love food and very much enjoy eating, no night sweats, chills. I don’t get it. Your post made me feel better about the meds and side effects. When I was researching I thought if I am not experiencing any ill effects then why do I want to take something that will make me ill.

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Hello @wal6578 . I understand your concern. I have been diagnosed with bronchiectasis as well as MAC. Originally my local pulmonologist said…the cure can be worse than the disease. We were to take a wait and see approach. Since that time, I discovered this group and found that inhalation of a 7% saline solution is a good protocol for clearing phlegm and, I believe, keeping the bug down. Since I had a mistrust of my local Dr, I also went to Mayo for a second opinion and for information that I had not received. (extensive) It was so very worthwhile for my peace of mind and for staying on top of this health issue. I too have a mild case of both with little symptoms other than excess phlegm, a little shortness of breath and some fatigue. I cannot tell you how good it was to get advice from someone that I trusted…along with the inclusion of advice to nebulize 7% saline, a suggested acapella for clearing the airway and attention to actually ridding me of my years of acid reflux which can aspirate into the lung. He said no need for drugs and possibly I may never need them. Anyway…I think you would benefit from a second opinion. I have peace of mind and the future is not so scary to me. He has me stay on top of my disease with yearly X-rays and sputum tests…and always have a script for a 2 week antibiotic in case of a flare-up. I hope you are in a similar place. I would certainly seek a second opinion, if only for peace of mind and to check the pain in your chest. Also, I have learned on this site that there can be a natural conversion of MAC. Wow! This site is a great source of info. Best of health and luck to you. Kate

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