(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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@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..

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@suzie2017

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

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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…

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@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

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

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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 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.

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@suzie2017

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

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@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

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@suzie2017

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

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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.

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@suzie2017

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

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@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 

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@suzie2017

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

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@suzie2017 Suzie, you are right about this. I'm not a doctor, but I have done fair amount of reading on it. MAC is everywhere but for majority of the population, the existence of these bacteria is not a problem. They are opportunistic bugs that most likely attack those whose immune system is in one way or another compromised by either chronic ailments or temporary ones. Also, if you have bronchiectasis although otherwise healthy, excess mucus produced on daily basis due to bronchiectasis can trap these bacteria and cause infection. Or if you have GERD, the bacteria can be aspirated into your lungs and cause infection. Because the causes are varied, the MAC infections are manifested in different ways for different people. For that reason, we all take different routes as far as treatment is concerned. Some of us, myself included, do not need or choose not to get treatment with strong antibiotics either because intolerance or because the condition resolves by itself without them. When I first came to this group, I was shocked how many different stories there were. Some had almost no similarity to my own. But at the end of the day, we are all facing the same bacteria and doing the best we can to fight them. This forum is a very educational and eye-opening place to be to get and share advice, pointers and support.

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@suzie2017

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

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Nick, I will add your questions to my list. Do you think it is strange we have not heard from the doctor even though I sent him a message on Sunday asking if we should come in to talk about my husband’s new infection. We have heard nothing so far.

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@suzie2017

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

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@suzie2017, Suzie, I have found that many pulmonologists in private practice are clueless when it comes to mac infections. You would be amazed at the number of them who have never even heard of it. They get lab results back for a positive infection and then prescribe a 10 day run with a broad spectrum antibiotic. They don't even have a suseptability test run to see which antibiotics will work. I am happy to see that you are reading and learning all that you can about this. Knowledge is power! Yes, this is a very freaky bacteria that we are dealing with. The fact that it constantly morphs; makes it all the more allusive. Please keep us posted on your husband. If you would, tell him that we care and are here for him. (And you also.)

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@suzie2017

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

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@suzie did you had an appointment today with him. Are you talking about your family doctor? Have you talk to a doctor about his infection (MAC) Maybe you should call his office because he may not have opened his email.  Nothing is better then a phone call.

 The system here is different then the one in Canada. Windwalker knows more than i do about the American system.  Home we can’t email our Dr.  Maybe you should say instead we want an appointment with you regarding my husband lung infection.(don’t say “maybe

we should” be firm “we want “.  

Point of clarification Suzie  milk thistle is to help clearing the mucus in the throat and probiotic is to give your body good bacteria to fight the bad one. It will keep the immune system stronger to fight infection. XxNick

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@suzie2017

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

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No appointment with the Pulmonologist has been made as of yet. Today I learned that the Pulmonologist is out of the office until next Wed. I asked the receptionist to message the doctor and ask him to review my husband’s report and indicate if we should see another doctor. I am considering making an appointment with an infectious disease doctor if I can without a referral.

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@suzie2017

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

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@suzie2017 Here is a helpful tip for you: get a print-out of the lab results and ask for the suseptabilty test to be included. If a suseptibilty test was not done, (then that would be your first clue that your present dr isn't familiar with treating MAC.) Always keep a file with EVERY lab test result. That way you can look at it and know for sure what is going on, and you will have the hard copy to take to new doctors and discuss their interpretation of it. Another important question to ask about the lab result is 'how many colonies grew?' That question is important because it gives a clue to the bacterial load and can determine the degree of illness. Most private practice doctors use local labs like Labcorp, etc. They do not do a complete test on samples. They do not identify the mac specie or the bacterial load, and sometimes not a suseptibilty test. Some pulmonolgists will send the samples to NJH for proper testing if you request it. I recommend seeing specialists at a non-profit research clinic like The Mayo Clinic, John Hopkins, UCLA, MCV IN Va and others like these in your area. These places have cutting edge equipment and knowledge and the best care. I hope this tidbit helps.

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@suzie2017

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

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@sophie1019 It is recommended to soak your showerhead every 6 months in vinegar to kill any possible mac that be colonizing inside. You can fill quart size baggie with enough vinegar to cover the showerhead and use a large twist tie to hold the baggie on it. Leave it to soak for 3 hrs. Or you can take the showerhead off and soak it in a bowl. There is a list of topics you can find when you click on the word 'bronchiectasis/mac' for our group. If you schroll through, you will find a post called 'How to Prevent Re-infection of MAC'. It talks about the shower, and hotwater tanks, etc.

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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, Same here. I just do a quick cool off dunk and keep my head away from the water.

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