(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@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

Jump to this post

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

REPLY
@suzie2017

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

Jump to this post

@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

REPLY
@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?

Jump to this post

Not sure how to access it…

REPLY
@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?

Jump to this post

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✌️

REPLY
@suzie2017

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

Jump to this post

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.

REPLY
@suzie2017

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

Jump to this post

@lindam272, Yes thank you. It is always helpful to know what others are doing. I am following the same script. Good to make sure that we aren't going too nuts about certain sacrifices. I cringe if I have to take showers and go thirsty in restaurants if no bottled water available. I think I need to chill and just shower when not at home and drink that occasional water at a restaurant without guilt..

REPLY
@suzie2017

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

Jump to this post

I have a wate fall on.my shower head. Do you think that is okay. I cant get down in the tub, way too low…

REPLY
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

Jump to this post

Why aren't they giving you ethambutol and rifampin….less side effects

REPLY
@suzie2017

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

Jump to this post

@nick52 My answer is similar to Ling. I also had no symptoms that I knew of, except constant throat clearing, excess mucus, coughing at night. In 2008, I was told that was from acid reflux. In 2014, I was diagnosed with lung nodules, also told from silent aspiration from acid reflux. In 2016, I was on blood thinner for aFib and I coughed up blood several times. At that time, they saw a large nodule on a CT scan that they wanted to biopsy. When I had the nodule removed, that was when I received my MAI and bronchiectasis diagnosis. I still have the same symptoms I originally had and no others. I, also, have not taken any antibiotics. I use the Aerobica twice a day to clear my lungs.

REPLY
@suzie2017

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

Jump to this post

@ginak thanks for your response. Really appreciated! What is aFib ? According to the radiologist this summer who did a video deglutition xray in the fall of 2017 aspiration cause bronchiectasis. Have you considered taking probiotics. It would be great if we

can make our own research by taking the same probiotics.  I had a lot of mucus and I do not have any anymore.  Is it because of no MAC or is it because of my milk thistle and probiotics.  No more mucus, no more coughing nothing! My breath is very normal. I

am very careful on acidic food also since my doctor said that acid reflux can cause aspiration to the lung.  It could be the cause of our Bronchiectasis which is why we are more apt to catch bacteria or organism.  I never had blood but all the other symptoms

you had.  Your story sounds like my story except blood.  Aerobica is it working well? I do not take anything to clear lung right now because I have no symptoms. I swear by those probiotic of Dr Ohirra’s.  I was so miserable with clearing my throat all the

time. I believe  God guided me. thanks Gina! I will google aerobica! Nick 52

REPLY
@suzie2017

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

Jump to this post

From reading many of the posts, I think MAC is the strangest infection I have ever heard of. Some people don’t have symptoms, some do, some people don’t take the strong antibiotics but take probiotics or milk thistle. Sometimes symptoms go away on their own. From what I am learning, MAC does not seem serious to most people. We are still waiting for an appointment with the Pulmonologist. Maybe he does not think it is serious either.

REPLY
@suzie2017

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

Jump to this post

@suzie glad you will see the doctor.  Ask him if a part of the population have MAC without symptoms and live with it without problem?  Ask the Dr if an acid reflux stomach can get by aspiration to the lungs or can get to your lungs somehow if it is bad? 

Ask him if bronchiectasis can be caused by aspiration to the lung?

My doctor confirmed all these question to me by a Yes!

Good luck! Things will go well! We will send you good energy! Nick 

REPLY
Please sign in or register to post a reply.