(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

@suzie2017

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

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@joan912, Joan, it is rare that men get ac infection; may I ask what he did for a living?

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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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@meagan123, I would have to research back to where exactly I learned this information. I may have read ot in some of Dr. Falkingham's medical journals (Google him and you will learn a lot about mac) He is a mac researcher at Va. Tech. I may have read it or saw videos from the NTM.org group. Or possibly from a speaker that was at the conference in D.C. The information is out there, you just have to take the time to dig for it. If I run across the info in print again; I will pass it along. I will see if I can pull it up from some older posts.

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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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@megan123, I looked back on older posts regarding this issue. You and Katherine have even had this conversation over a year ago. Katherine stated she would never get into a public pool again once she found out what bacterias lurk there. There are listed threads on our mac communty. There is one for swimmimg pools. Do you know how to use this site and find topics that we have discussed? If you don't; let me know and I will try to help. How are you doing these days? Are you clear of mac as of now?

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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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@megan123, I Googled mycobacterium avium swimming pools and lots of info popped up. I am on my phone doing this so I don't have a lot of options for copying and pasting it to you. I am still learning ways to import info for our support group. If you want, Google it for now. I was bummed to learn that there is no completely safe place for us to enjoy the water. I have read that mac is even in the ocean!! I moved to the beach to swim in the ocean. I don't go in the ocean much here, not because of mac, but because of the large sharks they have been catching off our coast. (16 ft great whites and 12 ft tiger sharks) I am sorry but that does give me pause.

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@suzie2017

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

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Can you give me the name of the med you take for ten days. Would truly appreciate it…

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@suzie2017

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

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Thank you, I will mention your doctor's therapy to Dr. Aksamit.

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@suzie2017

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

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@windwalker, Please list all the precautions that you follow not to get reinfected. It is so helpful to see what others are doing … and not doing. Thank you. Hope that others respond as well.

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@suzie2017

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

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@nick52 Hi Nick, I was diagnosed with MAC when I coughed up large amount of blood out of the blue in the fall of 2014. No fever, no fatigue, no shortness of breath, no weight loss. I do cough sometimes which produces excess amount of mucus for the past 20+ years. But that is the result of having allergies and bronchiectasis, although I did not know I had bronchiectasis until the MAC diagnosis. I have not been on any drug treatment and have not used probiotics. I'm doing fine without symptoms (other than excess mucus) and have not coughed up blood since the first diagnosis.

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@suzie2017

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

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@joan912 reading people on this chat site I have to say that I agree with Windwalker’s Dr Leventhal that the BIG 3 is over prescribed. Hearing all the secondary effect is it worth to take it right away. You may consider that option if you have tried other things.

Remember if you take antibiotic you must add probiotic to keep your immune system strong! Probiotics (good ones) is the best precautions as far as I am concern. Check Dr Ohirrah if you can afford it.   There is so much alternative medicine today that maybe

that option could be consider first. You can consult a naturopath, or a homeopath, they can guide you what to take to clear lungs or mucus or arhritis.  MAC is everywhere as per my doctor, dust, earth etc.. how can you avoid that?  My philosophy is that  I

will not live with fear because FEAR is a very strong energy (what I mean is if you are scare of having an accident energy will get you into an accident) so i look at it as any other disease.  If I have a heart attach If I live with fear chances are I will

have another one. Live your life with trust and faith that God wanted you to learn something from it and to make your soul stronger with unconditional  love !  Lung = joy to live .  

My dear MAC friends MAC can be scary when you read about it but do not let that scare you we will live our life with faith and eat healthy food to keep that beautiful vehicle(body) that God gave us in good shape!  Love Nick52

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@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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@2017 Suzie I have middle back pain and have groin pain when my back is bad.  He might want to consider a MRI ( no radiation) for his back. It had nothing to do with my MAC.

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@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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So many aches and pains, it is hard to know what is causing them. Thanks for your reply!

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@suzie2017

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

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@128128terry11t – Hi, Terry, I thought I would chime in with the precautions I take since being diagnosed 2 1/2 yrs ago. I now take tub baths instead of showers, I stay away from misting systems and sprinkler systems as best I can – not always easy in Arizona! I wear a mask or some other covering over my face if working in the soil or potting plants (potting soil is one of the largest sources of NTM). I try not to go out much on really windy days as there is so much dirt in the air at those times – again Arizona! I don't drink anything out of the tap or any filtered water – bottled only. No ice cubes. If I could afford it, I would only drink spring water. I'm probably forgetting some things. It just becomes a new way of life. I don't live in a bubble, but I do try to stay aware. I hope that this helps. Linda

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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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Not sure how to access it…

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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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Yikes….that's scarey with the sharks….I'll google that site to get more info…I swim in ocean and lake at cottage, tread water, never dunk…,now I will just go in and out to cool off..tks so much for your help… going to google✌️

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@suzie2017

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

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Does anyone ever get to a day when you don't think about having MAC. I hate having this seemingly consume my whole life. I still can't believe in this day and age of discovery that there is no better treatment.

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