(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

@lorifilipek

@poodledoc Thanks for the information!

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wow super interesting. I know most of us have either the acid or mist reflux because we have gerd or hiatal hernia. Goes along with bronchiectasis. I knew the proton ump inhibitors were rally bad and did nothing but my gastroenterologist kept pushing more and more. Quit them a long time ago an use diet and elevation to combat symptoms, works better! I wish doctors knew more. People taking way too many pills, which now they say can lead to dementia. Thanks for article. xo

Liked by lorifilipek

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@unicorn

wow super interesting. I know most of us have either the acid or mist reflux because we have gerd or hiatal hernia. Goes along with bronchiectasis. I knew the proton ump inhibitors were rally bad and did nothing but my gastroenterologist kept pushing more and more. Quit them a long time ago an use diet and elevation to combat symptoms, works better! I wish doctors knew more. People taking way too many pills, which now they say can lead to dementia. Thanks for article. xo

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Hi @unicorn Could you please tell us what diet changes you made to get rid of GERD. I have been on pills for it for 5 years and having trouble getting off them. Thanks Heather

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I am also curious about dietary changes that you've made to reduce/get rid of GERD. My doctor told me not to eat or drink anything for 3 hours before going to bed and elevate the head of my bed to 30 degree angle. It was almost impossible to sleep with this angle so I reduced it a bit and it still seems to be helpful.

There was a good presentation on this at a conference on MAC; someone posted it here within the last couple of months. I watched it but didn't save it and I can't remember where the conference was held or who the speakers were. I'm sorry but it seems to be much the same information as that which I got from my doctor.

Thanks,

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@heathert

Hi @unicorn Could you please tell us what diet changes you made to get rid of GERD. I have been on pills for it for 5 years and having trouble getting off them. Thanks Heather

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@heathert Yes, my local pulmonologist believes that's how I got bronchiectasis and MAC because he asked me if I slept on my stomach and I said I always sleep on my stomach and had for years. Well, I don't really anymore because apparently the reflux aspirates into your lungs in the middle of the night if you're on your stomach. And I was tested for GERD and have it and also have a hiatal hernia and I swear I remember some gastro doctor who was just a friend saying to me that if you have reflux you will always have it. And especially with a hiatal hernia. It's like it's an open gullet to your stomach. So I sleep on a wedge now with a couple of pillows and start off sleeping halfway sitting up but then before the night is over I get rid of a pillow. And I try really hard not to eat foods that cause reflux. But everyone is so different that different foods affect people differently. Like I figured out one night that I couldn't eat apples at night because I had terrible reflux. Imagine that. With apples. So if I eat apples I try to eat them earlier in the day. I also don't take the PPI drugs just because I don't like them so I basically try to eat as healthy as I can. My only problem is chocolate which also cause reflux for some people. I try and pretend it doesn't for me but I can never really tell. Every now and then if I know I've eaten something that might give me trouble I'll take a Zantac but that's only every once in a while. Nan

Liked by heathert

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@kathyhg

I am also curious about dietary changes that you've made to reduce/get rid of GERD. My doctor told me not to eat or drink anything for 3 hours before going to bed and elevate the head of my bed to 30 degree angle. It was almost impossible to sleep with this angle so I reduced it a bit and it still seems to be helpful.

There was a good presentation on this at a conference on MAC; someone posted it here within the last couple of months. I watched it but didn't save it and I can't remember where the conference was held or who the speakers were. I'm sorry but it seems to be much the same information as that which I got from my doctor.

Thanks,

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I believe you are thinking of the National Jewish patient lecture series from last Sept. Dr. Jeffrey King talked about the relationship between GERD and bacteria in the lungs. As I recall, it's not the kind of GERD we are familiar with because mycobacteria don't live in stomach acid. He described a test for the kind of GERD that causes lung bacteria. That test requires a measuring device dropped through the nose into the esophagus which must be left there for 22 hours.

I hope someone will post the link again.

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@nannette

@heathert Yes, my local pulmonologist believes that's how I got bronchiectasis and MAC because he asked me if I slept on my stomach and I said I always sleep on my stomach and had for years. Well, I don't really anymore because apparently the reflux aspirates into your lungs in the middle of the night if you're on your stomach. And I was tested for GERD and have it and also have a hiatal hernia and I swear I remember some gastro doctor who was just a friend saying to me that if you have reflux you will always have it. And especially with a hiatal hernia. It's like it's an open gullet to your stomach. So I sleep on a wedge now with a couple of pillows and start off sleeping halfway sitting up but then before the night is over I get rid of a pillow. And I try really hard not to eat foods that cause reflux. But everyone is so different that different foods affect people differently. Like I figured out one night that I couldn't eat apples at night because I had terrible reflux. Imagine that. With apples. So if I eat apples I try to eat them earlier in the day. I also don't take the PPI drugs just because I don't like them so I basically try to eat as healthy as I can. My only problem is chocolate which also cause reflux for some people. I try and pretend it doesn't for me but I can never really tell. Every now and then if I know I've eaten something that might give me trouble I'll take a Zantac but that's only every once in a while. Nan

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Thanks @nannette thank you so much for that info, its always nice to see what affects others, sometimes I think everything causes it and other times nothing. Went to Singapore and it went completely while I was there, maby we should all move to Singapore, its a great place. I really want to get off the PPI drugs.

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@rits

I believe you are thinking of the National Jewish patient lecture series from last Sept. Dr. Jeffrey King talked about the relationship between GERD and bacteria in the lungs. As I recall, it's not the kind of GERD we are familiar with because mycobacteria don't live in stomach acid. He described a test for the kind of GERD that causes lung bacteria. That test requires a measuring device dropped through the nose into the esophagus which must be left there for 22 hours.

I hope someone will post the link again.

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Very interesting! I had no idea “our” GERD is so special!

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@heathert

Thanks @nannette thank you so much for that info, its always nice to see what affects others, sometimes I think everything causes it and other times nothing. Went to Singapore and it went completely while I was there, maby we should all move to Singapore, its a great place. I really want to get off the PPI drugs.

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I was first diagnosed with “silent reflux” because of a chronic cough and throat clearing. Started treatment with Pepcid, then was put on big doses of PPI's. Cough never went completely, so finally saw pulmonologist and discovered MAC. I never had heartburn until I tried to come off the PPI's. When you stop them, you get a rebound of increased acid production. It took a really long time (months) of extremely gradual tapering to get off them and I don’t think I’ll ever take them again! They shut down the acid, but you still have the reflux. If acid keeps the MAC down, maybe that's even counterproductive! We need more research for sure! Now I manage the reflux with sleeping position, diet, and going to bed with an empty stomach. There’s some new procedure in Europe for reflux that works with a nerve stimulator to increase the tone in the esophageal valves. That would be a great option to have!

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@heathert

Hi @unicorn Could you please tell us what diet changes you made to get rid of GERD. I have been on pills for it for 5 years and having trouble getting off them. Thanks Heather

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I have hiatal hernia, I dont get heartburn because I eat correctly. But my stomach still comes up and I have to elevate until I fall asleep then everything falls back into place. I know because I wake up a few times at night and I am sleeping flat. I dont elevate bed, just pile a bunch of pillows up. I can take naps without stomach bother probably because not end of day so not so tired. My diet is pretty much common sense. I eat organic foods, mostly fruit and veggies. I eat a little meat and will Never give up sushi. Fish and rice good for stomach anyway. I eat as low or no fat as possible. after 2 years of taking pills my stomach and bowels were wiped out so it is a battle to keep weight on. I am 5'11" and weigh 125 on a good day. So, I Have to eat something for dinner or I drop too low. Before the pills I was always a little overweight, 5-10, so I never ate dinner, but now is different. YES my friends hate me, haha I've discovered that if I eat a large meal at night, my stomach actually stays down if I go to bed flat!!! Possibly the weight of the food keeps stomach in place. If I eat a little, it comes up. But I always; eat low fat and I mean common sense whole grain not frozen organic low fat real food, totally goes against the american diet. ( big pharma will argue against this for obvious reasons) I also work out. I have 10 pound weights and do squats,donkey kicks, arms, take stairs walk tons with dog, at 72 I get a lot of whistles from the back, til they see I am grandmas age!! My doc says I am maximizing my time and minimizing the disease. Everyone I see in her waiting room is fat. She is young and slim, and so am I. We talk fashion, she wears Ferragamo shoes, I dig it.
She says she has many patients with MAC who are in their 80's. Maybe I will be one. 2 documentaries to see, "Game Changer"
and "What the Health" I only take one pill, thyroxin, lowest dose and I am suspicious of that! My dad died at 104,,(took zero pills) Played tennis til 100, ate pretty much my diet, but big lunch, small dinner, french italian so did not buy into hamburger fries and coke poison crap.. My parents ate good whole foods, mom died 94. Everyone should do their own due diligence, beyond the doctor and beyond what all the big government agencies say to do, educate yourself. xo

Liked by heathert

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@sueinmn

@pamelasc1 Hi Pam – I was able to find one study that directly addressed charcoal water filters. Here is a link: https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.201301-013FR.
Also, keep in mind the mycobacteria infects by aerosolized droplets being inhaled, not from being ingested, so you need to decide if using a Britta or similar device for drinking water is a risk you are able to tolerate. In my case, we use drinking water taps which we filter, and I force my husband to change them every month. I figure since MAC/NTM have been found in bottled water as well as tap/municipal water, the risk of having a filter is one I accept in order to have palatable water. I do, however, limit my exposure to water vapors – no hot steamy showers, run the fan, get out of the bathroom and dress in the bedroom while the vapor dissipates… And, sadly, stay out of and away from hot tubs (a social gathering place in our community.) And I use boiled water for cleaning our nebulizers and breathing devices.
By the way, do you have a well, or municipal water?
Sue

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Hello and thank you Sue and others who replied to my question about using a Britta filter: my tap water is from deep water wells run by the town… so it is municipal. Thanks to your answers I will not longer drink the water cold from the Britta. However, if I pour it in the tea kettle and bring it to a boil , do you think it is safe? Or should I boil it twice? Pam

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@pamelasc1

Hello and thank you Sue and others who replied to my question about using a Britta filter: my tap water is from deep water wells run by the town… so it is municipal. Thanks to your answers I will not longer drink the water cold from the Britta. However, if I pour it in the tea kettle and bring it to a boil , do you think it is safe? Or should I boil it twice? Pam

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@pamelasc1 Hi Pam – MAC/NTM are killed by heat well below the boiling point (I think I have read 145F?) so heating to boiling one time should be sufficient. I like my water COLD, so I place it in a well-scrubbed, covered pitcher in the refrigerator. I clean all cups, glasses, water bottles, pitchers, etc and my tea kettle with dish detergent, hot water and vigorous scrubbing regularly to keep any NTM and other germs at bay. This prevents the formation of the "biofilm" where NTM like to hide and reproduce. Studies of water pipes and shower heads seem to indicate the biofilm starts forming in a couple of weeks if not disturbed. When available, I use my dishwasher for this – but no space for one in my tiny house here in Texas. Sue

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I have always been told that the only way to get rid of the NTMs is to boil it in water (that has already boiled) for 10 minutes adding an additional minute for each 1000 feet above sea level. So, unfortunately, cleaning and rinsing for however long in hot water will NOT get rid of the bacteria. Hope that this is helpful.

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@sueinmn

@pamelasc1 Hi Pam – MAC/NTM are killed by heat well below the boiling point (I think I have read 145F?) so heating to boiling one time should be sufficient. I like my water COLD, so I place it in a well-scrubbed, covered pitcher in the refrigerator. I clean all cups, glasses, water bottles, pitchers, etc and my tea kettle with dish detergent, hot water and vigorous scrubbing regularly to keep any NTM and other germs at bay. This prevents the formation of the "biofilm" where NTM like to hide and reproduce. Studies of water pipes and shower heads seem to indicate the biofilm starts forming in a couple of weeks if not disturbed. When available, I use my dishwasher for this – but no space for one in my tiny house here in Texas. Sue

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THanks for this info Sue: so if I took off my shower head and boiled it, would that get rid of any MAC? If so, this is a better solution than having to replace it. Pam

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@pamelasc1

THanks for this info Sue: so if I took off my shower head and boiled it, would that get rid of any MAC? If so, this is a better solution than having to replace it. Pam

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@pamelasc, an easy way to kill it in the showerhead is to fill a baggie with cleaning strength vinegar and twist tie it over the showerhead. Let sit for 3 hrs and remove. Gallon size baggie might be easier to use.

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@pamelasc1

THanks for this info Sue: so if I took off my shower head and boiled it, would that get rid of any MAC? If so, this is a better solution than having to replace it. Pam

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@pamelasc1 @windwalker Pam – Terri's vinegar solution is endorsed by the MAC specialists at National Jewish Health. At least in my home, it is certainly easier to do than removing the shower head and boiling (especially since I think repeated boiling would ruin the rubber washer/gasket thingies. It is important to use cleaning/industrial strength (7-10% acetic acid) as mixed results have been shown with household strength (3-5%.) I get mine from a friend who works in a lab, so don't know a retail source, sorry. I'm sure others here can tell you where they find it.
Terri – How often do you treat your shower heads? I admit my effort is hit-or-miss, kind of when I think of it, but possibly not often enough.
Sue

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