(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

@garry

I use to have my tub in the basement. I have heard that about hot tubs. Mine now is outside in the fresh air.I have also heard that the mac virus is every were in the soil etc. I do not use chlorine in my tub . I use copper I am always cold so I find that the steam room and ht warm me up. If I was sure this was causing my mac I would get rid of it. I got mac years ago before I had a ht.

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@garry I think that is very good that your hot tub is outside. What I understand about MAC is that we don’t want to continually reinfect ourselves. I have no earthly clue (just maybes) about how/where I got MAC, but I am careful to avoid anything that I know could potentially “feed” it or be a source. Yes, MAC is everywhere, so we can’t avoid that. However, my goal is to get it gone from my body. I may have taught the importance of sharing in kindergarten, but I don’t like sharing my body with this opportunistic pathogen! (Nope – not one single bit!)

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I agree eating properly is important and we do My wife is a great cook. We have no dairy flour red meat or boose. I was determind to beat this without antibiotics but it is not working. Some antibiotics work arithomicin was good but now it is loosing unless i take 750 a day and then my stomach is on fire.I have tried a nebulizer with different things. Not much success.

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Thank you all for your input. This is my first time I have been on this site and I never realized how many people have mac. Before i new what I had. I was sent to a nut Dr. He pulled my wife off to the side and had a chat with her. It is good to hear that i am not the only nutty person with mac. Not good that u have it but good to share stories and results. One thing I know for sure is mac does not show up on a chest xray.

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@garry

Thank you all for your input. This is my first time I have been on this site and I never realized how many people have mac. Before i new what I had. I was sent to a nut Dr. He pulled my wife off to the side and had a chat with her. It is good to hear that i am not the only nutty person with mac. Not good that u have it but good to share stories and results. One thing I know for sure is mac does not show up on a chest xray.

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@garry – This is a truly frustrating disease, and answers can be hard to get.
Here is what I have learned since diagnosis about 2 years ago:
It is very important to find a pulmonologist well-versed in MAC and one who keeps up-to-date in treatment options. No easy task if you are not in a populous area. My Primary referred me immediately when bronch was suspected because there are so many variables. I switched pulmonologists when I realized the first one wasn't willing to consider any but the most basic forms of treatment.
Most people don't know "how I got it", but there are a lot of known vectors to avoid. Hot tubs and steam rooms top the list. Also, steamy showers, garden & potting soil, humidifiers and water filters, in some cases our very water supply… We all need to protect ourselves as best we can. So I have given up the community hot tub, limit my showers, wear mask & gloves for handling soil, pay someone to do the dusty yard work. But I haven't had my water tested because I believe the digestive tract kills MAC and don't have any kind of reflux. Others with reflux issues choose to be more cautious, boiling the water they use for cooking, drinking & cleaning their equipment.
Everyone responds differently to the medication. In my case it caused severe digestive issues, fatigue & weight loss, which I tolerated until the CT scan showed the lesions on my lungs were disappearing and my cough was gone. The infectious disease doc stopped it after 1 1/2 years to give my body a break. I still test positive in my sputum, but we are trying a 7% saline neb to eradicate it. At some point, if the saline isn't effective and the cough & spots come back, I'll probably be back on the meds.
If your doctor is considering treatment again, it is vital that sensitivity testing be done on you sputum culture so that the correct drugs are used, my understanding is that, except for maintenance (see @windwalker) single meds are not effective.
Sorry for the long post, but I am passionate about helping people advocate for themselves and get the answers they need.
By the way, there ARE people studying MAC! And it is an evolving knowledge base. National Jewish Health is a wonderful source of information, here is a link: https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos.
Has your sputum been tested recently to be sure you are on the best regimen for what you have? There are many strains of MAC, and you may have a different one than the original, or the one you have may have become resistant to the antibiotic you have used for a long time.
Sue

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@garry

Thank you all for your input. This is my first time I have been on this site and I never realized how many people have mac. Before i new what I had. I was sent to a nut Dr. He pulled my wife off to the side and had a chat with her. It is good to hear that i am not the only nutty person with mac. Not good that u have it but good to share stories and results. One thing I know for sure is mac does not show up on a chest xray.

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@garry Sorry to tell you, but it kind of does! I never had a radiologist call me at home till we moved to Tennessee for a hot second. This Dr. called me and told me to get right to my primary for further evaluation as there was something very suspicious on my X-ray. (Which was taken for a back issue). I calmed the poor man down and told him “No worries, I have nodular MAC, and my doctor is well aware.” I was actually touched by the fact he was so concerned and had called me! So I guess it kind of shows up as “something.” A CT scan will confirm MAC.

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Garry: You are right. It's more like a CT scan will show if the MAC is evolving, tree in bud, etc. but it will not diagnose MAC. In fact, when I first had a CT scan they diagnosed me with severe asthma, Luckily a savvy doc did a bronch, and sputum tests and I learned what I had but by then I was coughing up blood. 2 years of the big 3 drugs left me with tinnitus, glaucoma, really messed up bowels, stomach cramps, wierd skin rashes, heart palps, loooow blood pressure, and way under weight. Mom died at 94, dad died at 104, neither took any pills for anything!!!, the pills demolished me. Just had a CT scan yesterday so will see the progression after 2 years no drugs. i actually feel pretty good now, tired but I move well and enjoy life. Learn as MUCH as you can, you'll find you know more than some docs. Keep on top of new research. xo

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@unicorn

Garry: I know very few people who get rid of this disease and not get it back. Possibly they are young and strong and dont have bronchiectasis, which promotes re-infection. I personally dont think think pills work and that they do more harm than good. Unfortunately it is all we have right now. My infectious disease doc said all research is going to aids now, and not MAC. There may be some new inhalers coming in the next 5 to 10 years though. The pills cause massive weight loss and it is hard to keep the weight on, (for me anyway). It's always best to eat well, and exercise. Try to maximize your survival skills to fight off symptoms. My lung doc said this is a slow growing bacteria and she has patients in their 80"s, good enough for me! Work out and eat organic! xo

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@ Unicorn I'm eighty-three and have had Mac for over ten years.Did just one antibiotic and loss hearing in one ear. Never touched the meds again. Nevertheless I have lost thirty pounds. Just when you think you're on to something the disease finds a new way to show its power. The fatigue rarely goes away.

Liked by unicorn

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@garry

Hi I went for years not knowing what I had. Finally a young intern sent me to a specialist and he did at lung test. After that I went on 3 drugs for 6 months. That was 5 years ago. Now I am trying to find some new drugs because the ones I am on are not working. I now have 2 spots on my lungs. I went on an fruit diet. I understood that infection can not live in a normal ph level . So i only ate fruit and vegitables for 6 months lost 30 lbs. Not trying to loose weightjust wanted to eat healthier. I was off all antibiotics for 3 months and now it is back. I believe eatting propperly helped. I was working hard over the three months I was anibiotic free and I got run down.
I have a steam room and a ht tub that I regulary use trying to loosen my chest up. It is not working. Not sure what to do next Garry

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Get rid of the steam room and hot tub…loaded with bacteria that causes the disease. Read up on it; you are doing yourself no good.

Liked by alleycatkate

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@garry Most definitely steer clear of hot tubs and steam rooms. It is also advised to not use swimming pools and use caution with showerheads. I stopped taking showers and use the tub…If I am dying for a shower….I have cheap Lowes showerheads and throw them out usually after a few uses. Some on this site soak their shower heads in vinegar. Also, the refrigerator ice and water bar should be shunned. If you scroll back through this Mayo site you will pick up some very good tips on how to limit your exposure to MAC. I have it in my body…..and do not want to add more to my collection. Best, Kate

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@irene5

@garry Sorry to tell you, but it kind of does! I never had a radiologist call me at home till we moved to Tennessee for a hot second. This Dr. called me and told me to get right to my primary for further evaluation as there was something very suspicious on my X-ray. (Which was taken for a back issue). I calmed the poor man down and told him “No worries, I have nodular MAC, and my doctor is well aware.” I was actually touched by the fact he was so concerned and had called me! So I guess it kind of shows up as “something.” A CT scan will confirm MAC.

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@irene5 You are right. It was an xray that alerted my primary's partner that something was there, followed by a CT that confirmed bronchiectasis and "suspected MAC" which was confirmed by sputum culture. It was severe enough that the pulmonologist started treatment while waiting for sensitivity tests to come back, which confirmed his choice. It was also a repeat CT that showed enough improvement to quit the meds and go with just 7% saline to keep the remaining infection under control. Like @unicorn my body became more and more unhappy with the meds over time, especially after 6 months of every day!

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@sueinmn

@irene5 You are right. It was an xray that alerted my primary's partner that something was there, followed by a CT that confirmed bronchiectasis and "suspected MAC" which was confirmed by sputum culture. It was severe enough that the pulmonologist started treatment while waiting for sensitivity tests to come back, which confirmed his choice. It was also a repeat CT that showed enough improvement to quit the meds and go with just 7% saline to keep the remaining infection under control. Like @unicorn my body became more and more unhappy with the meds over time, especially after 6 months of every day!

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Yes Sue, at age 70 my body says “no thank you” to those everyday too. Some people tolerate them well. I was not one of those. I am on the alternating meds like Terri for the bronchiectasis and will discuss the 7% saline next week with my ID doctor at UMass. I want MAC gone for all of us! Irene

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@irene5

Yes Sue, at age 70 my body says “no thank you” to those everyday too. Some people tolerate them well. I was not one of those. I am on the alternating meds like Terri for the bronchiectasis and will discuss the 7% saline next week with my ID doctor at UMass. I want MAC gone for all of us! Irene

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What meds is everyone taking?

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I had a pet scan that showed a nodule on my lung and a lymph node that sort of lighted up. I can have a biopsy on the node or wat h it for 3 months then a cat scan. I had no symptoms at all. They found this when I had pnemonia 2 months ago. What should I do

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@garry

What meds is everyone taking?

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@garry When I was taking the antibiotics, it was azithromycin, rifampin & ethambutol. At first it was 3X/wk, but my lungs actually continued to get worse (though my cough improved) and the ID doc increased it to daily for 6 months. Lungs cleared of MAC spots and I am now on a daily maintenance regimen of 7% saline nebs with airway clearance device (Aerobika) plus the asthma meds montelukast (singulair) and Flovent. We shall see in April if it is working. Sue

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@sueinmn

@garry When I was taking the antibiotics, it was azithromycin, rifampin & ethambutol. At first it was 3X/wk, but my lungs actually continued to get worse (though my cough improved) and the ID doc increased it to daily for 6 months. Lungs cleared of MAC spots and I am now on a daily maintenance regimen of 7% saline nebs with airway clearance device (Aerobika) plus the asthma meds montelukast (singulair) and Flovent. We shall see in April if it is working. Sue

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Thank you for that info . I never heard of the saline so i got bottle of =
9% across the counter. I put it in my nebulizer. I see the dr on wed so =
I will ask for the 7%. I was asked for a sputum sample but i was not =
able to bring anything up. I never saw the point because I am on =
antibiotic's. Is it not suppose to kill the mac so how can there be a =
reading??

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