(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

@anniepie

Hi Heather @heathert, the research on iron supplementation and mycobacterial growth has been contradictory. More of the research has been done in Africa with populations regularly having high iron loads in their diets, and even overloading of dietary iron on a frequent basis. in those studies, people tended to have poorer outcomes with mycobacterial infections.
Some other studies have found conflicting results — iron supplementation even during TB had no effect on the mycobacterial burden in the lungs.
However, recent research with other populations found that if you routinely have low levels of iron in your diet, and have had some degree of anemia — for example many vegetarians — then supplementation with iron has no effect on increasing mycobacterial growth.
So if you continue to be a vegetarian, you should be safe to take iron supplements.
(See "Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections?", R. Agoro and C. Mura, 2019 — Pharmaceuticals 2019, 12, 75; doi:10.3390/ph12020075 http://www.mdpi.com/journal/pharmaceuticals).
Hugs, Annie

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Thank you so much @anniepie, that is great info(and very interesting and makes a lot of sense), I will start taking iron again. This MAC is so complicated. Love this site!!!!!!!!

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@heathert

Thank you so much @anniepie, that is great info(and very interesting and makes a lot of sense), I will start taking iron again. This MAC is so complicated. Love this site!!!!!!!!

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Could you relate how iron is involved with MAC. Thanks, Flib

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@flib

Could you relate how iron is involved with MAC. Thanks, Flib

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@flib It is very complicated but basically Mycobacterium requires iron for normal growth, we dont want them growing to fast or at all. Hope this helps. Heather

Liked by anniepie

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@heathert

Hi all. I was wondering if anybody had info on Iron, I read somewhere not to take iron supplements, are we not meant to eat iron foods either. I am vegetarian and often need iron supplements. Not sure what to do. Thanks Heather

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@heathert …Thanks for the heads up on the iron. I will be asking for iron bloodwork next I visit my GP, since I am vegan too I did see this (not sure where) and thought it important.
"Iron is a double-edged sword. If we don’t absorb enough, we risk anemia; but if absorb too much, we may increase our risk of cancer, heart disease, and a number of inflammatory conditions. Because the human body has no mechanism to rid itself of excess iron, one should choose plant-based (non-heme) sources, over which our body has some control." 
Kate

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Hello – I have a question about using a Britta water filter. Is there any reason NOT to use the Britta? Pam in Sudbury, MA

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@pamelasc1

Hello – I have a question about using a Britta water filter. Is there any reason NOT to use the Britta? Pam in Sudbury, MA

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I have read that Mycobacterium has an affinity for charcoal which is in Britta filters. We use one in our house but change the filter monthly instead of 2 months that is recommended on the box. I would not get the "extended" filter that is available.

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I was told not to use it at all. I didn’t know about Mac liking the charcoal filters but I was told that it takes about 2 weeks for Mac to colonize and therefore if could be worse to use it than just using plain tap water.
Perhaps others have opinions but we got rid of ours and got a reverse osmosis system instead – I’ve still heard concerns even about that but it’s the best we could do without buying plastic bottles of filtered water and creating more recycling/garbage.

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@pamelasc1

Hello – I have a question about using a Britta water filter. Is there any reason NOT to use the Britta? Pam in Sudbury, MA

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@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, I just started med's for MAC last week yesterday took the next 2. Not a good night and day today. Will it get better. Not sure how long i;ve had it found it on Thanksgiving 2019.

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@videlia

Hello, I just started med's for MAC last week yesterday took the next 2. Not a good night and day today. Will it get better. Not sure how long i;ve had it found it on Thanksgiving 2019.

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@videlia As you will learn from reading the various threads here, everybody has a different experience with the antibiotics. If you haven't scanned through some of them, you might try – at the main MAC group page (https://connect.mayoclinic.org/group/mac-bronchiectasis/), you can scroll down and find some that interest you. I was on them for 18 months, and gradually my body learned to tolerate. I developed a system of taking them near bedtime because my days were too miserable if I did it in the morning. I also used ginger tea to ease my stomach, ate yogurt and took probiotics to protect my system. Other people develop other strategies for coping. If you experience loss of appetite and unwanted weight loss, you could try frequent small meals or snacks of protein-rich foods like nuts & cheese.
Did you receive any counseling from your doctor or pharmacist on what to expect, how to manage, etc? Were you given a name and phone number to contact with questions? In my case, the pulmonologist wasn't very helpful, but his nurse was wonderful, and always willing to answer questions and/or find information for me.

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@alleycatkate

@heathert …Thanks for the heads up on the iron. I will be asking for iron bloodwork next I visit my GP, since I am vegan too I did see this (not sure where) and thought it important.
"Iron is a double-edged sword. If we don’t absorb enough, we risk anemia; but if absorb too much, we may increase our risk of cancer, heart disease, and a number of inflammatory conditions. Because the human body has no mechanism to rid itself of excess iron, one should choose plant-based (non-heme) sources, over which our body has some control." 
Kate

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@alleycatkate It is all so tricky, I use floradix or floravital, which is a liquid iron made from fruit and veg, its great and tastes ok also.

Liked by alleycatkate

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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 Sue, You make very good points here but I believe that Mycobacteria can also cause infection from ingestion. It is documented that MAC is often concurrent with GERDS (Reflux). There is a less well known form of reflux called laryngopharyngeal reflux (LPR) aka Upper Airway Reflux where the refluxate is more aerosolized than with regular reflux and can actually get up into your upper airway and even work it's way down into your lungs. If you do have Reflux and/or LPR and also have MAC you may need to address the reflux with lifestyle and diet changes. I have personal experience with both LPR and MAC. So I do all the preventive measures that you mention in your post but I also try to at least lower the number of Mycobacteria that I take in orally.

Liked by lorifilipek

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@poodledoc Very interesting – I shall have to do some reading. Can you suggest any resources?

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This is one of the articles I have seen explaining how gaseous reflux gets into the lungs. https://breathe.ersjournals.com/content/9/4/256 It does not mention NTM or MAC specifically but I have read other articles that do. Also Dr Jamie Koufman is an expert on LPR here is one of her articles http://www.voiceinstituteofnewyork.com/patient-services/treatments/diagnosis-treatment-of-chronic-cough/ She also has a book called The Chronic Cough Enigma you can find on Amazon.

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@poodledoc

This is one of the articles I have seen explaining how gaseous reflux gets into the lungs. https://breathe.ersjournals.com/content/9/4/256 It does not mention NTM or MAC specifically but I have read other articles that do. Also Dr Jamie Koufman is an expert on LPR here is one of her articles http://www.voiceinstituteofnewyork.com/patient-services/treatments/diagnosis-treatment-of-chronic-cough/ She also has a book called The Chronic Cough Enigma you can find on Amazon.

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@poodledoc Thanks for the information!

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