(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

By the way…. question, I assuming the answer is no. Does anyone still use a waterpik? I used to use one all the time and now I'm wondering if this is a no no. Thank you for any responses. I'd like to know ….. Toni

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@toni1132

I'm new to this site and appreciate all the input from those contending with this disease! It's my understanding that the MAC exists in the showerhead itself. I was told to dismantle the showerhead once a week and soak it in vinegar. What I also read is that copper kills bacteria. Therefore, I replaced my shower hose and showerhead with copper. The hose is copper infused and the showerhead is solid copper. It's easy peasy to unscrew the head after every shower and drain it and let it air dry, also. I hope this helps! Tonni

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@toni1132 Hi Toni, I soak my showerhead in a plastic container of neat vinegar for at least an hour then screw it back on. The American Thoracic Society suggests using neat bleach. But mycobacteria are resistant to bleach so I don't do that.
The research I've seen shows that mycobacteria grow especially well in showerheads — much better than in taps etc. (Showerheads can have up to 4,000 times the number of mycobacteria than happens in prdinary running tap water in the same house!). So apart from drinking long-boiled water, very frequent cleaning of our showerheads is the best thing we can do. So I use a cheaper showerhead and replace the whole thing twice a year — the vinegar causes some rusting around the shower holes.
P.S. Copper showerheads might help to control some bacteria but unfortunately won't help much to kill mycobacteria. The main thing is taking the shower head off and soaking it all in neat vinegar frequently.
Good luck, Annie

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I’m curious about waterpolo as well as I quit using mine. Does anyone else have experience with them?

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I’ve never heard of water polo—-WaterPik?

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@anniepie

@toni1132 Hi Toni, I soak my showerhead in a plastic container of neat vinegar for at least an hour then screw it back on. The American Thoracic Society suggests using neat bleach. But mycobacteria are resistant to bleach so I don't do that.
The research I've seen shows that mycobacteria grow especially well in showerheads — much better than in taps etc. (Showerheads can have up to 4,000 times the number of mycobacteria than happens in prdinary running tap water in the same house!). So apart from drinking long-boiled water, very frequent cleaning of our showerheads is the best thing we can do. So I use a cheaper showerhead and replace the whole thing twice a year — the vinegar causes some rusting around the shower holes.
P.S. Copper showerheads might help to control some bacteria but unfortunately won't help much to kill mycobacteria. The main thing is taking the shower head off and soaking it all in neat vinegar frequently.
Good luck, Annie

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Has anyone ever developed chronic neutropenia caused by the Big 3 drugs? (Neutropenia = low neutrophils, low white blood cells).

This has really weakened my immune system, and I already have a primary immunodeficiency disease. Apparently it can happen sometimes with these drugs.

Now I've come diown with something new – or a few somethings – on top of the MAC/MAI, Off to the hospital tomorrow to see
Annie

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Oops! That was a bad autocorrect on my phone and I didn’t notice it!
Waterpik!!!

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@toni1132

Hi, Sue. Thank you for the welcome. I had read about pipes and the effect of copper. I'll try to find it and share the info. I have all copper in the house I'm in right now. I'm in the process of rehabbing my Chick's Beach house and it, too, is all copper. However, when I went to check progress last week, I saw the plumber did not use copper in the rehab job. He used some plastic pipe. Needless to say, that is not staying. I'm meeting the contractor tomorrow and will enlighten him ONE MORE TIME ! PS…. I will check my water heater temperature. Thank you for that !!
I'm curious. You mention your Texas yard that you share with chickens and wild birds. How in the world do you avoid the "dust"? I have two rescue parakeets and my daughter wants me to pass them onto another home. I was in the hospital this past weekend because I had a lung bleed which was somewhat substantial so I had to go to ER and they admitted me. The on call pulmonologist was in partnership with my usual pulmonologist and he too, was wonderful I asked him about my birds and he wasn't to happy to hear about them, but said he didn't want to end my love affair with them so the very least use a mask when I'm around the. What is your experience/knowledge? These are my two little friends and such good company.
Thank you for all your information! Regards. Toni

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@toni1132 We have planted low-growing native groundcover in our yard and next door, and it is irrigated because it is under citrus trees, so there is little dust. The other side it a septic leach field covered with gravel and then native plants, again little dust. Our windows our usually closed and we run a house fan and air purifier. Since we started this, minimal dust inside. On windy days I try to stay in or wear a N95 mask (my brother and I look like twins on those days – he lives across the street and also has lung issues.) A friend handles my bird feeders for me or I mask and glove. I switched from open water for the birds to a chicken-waterer to keep out their droppings and feathers – then I wash hands after I clean i & sanitize it.
Birds in the house have been on our no-go list for years – we had parakeets with psittacosis many years ago and the MD from the state health department told us about the risks because we had ashtmatic kids and an immuno-compromised older adult in the house. Of course we used to make an exception when my daughter's rescue parrot needed care, but even that is past. If you decide to keep your feathered friends, do you have someone else to do cage cleaning? If you must, my ID doc says gloves and N95 mask, then toss the gloves.

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@anniepie

Has anyone ever developed chronic neutropenia caused by the Big 3 drugs? (Neutropenia = low neutrophils, low white blood cells).

This has really weakened my immune system, and I already have a primary immunodeficiency disease. Apparently it can happen sometimes with these drugs.

Now I've come diown with something new – or a few somethings – on top of the MAC/MAI, Off to the hospital tomorrow to see
Annie

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@anniepie….good luck to you tomorrow with your testing…and let us know. So Sorry. Kate

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@toni1132

By the way…. question, I assuming the answer is no. Does anyone still use a waterpik? I used to use one all the time and now I'm wondering if this is a no no. Thank you for any responses. I'd like to know ….. Toni

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@toni1132 ..Hi Toni…Yes, I still use a waterpik and question it's use all the time but feel I need it as I have had extensive gum surgery. I add some colloidal silver to the water towards the end of the session every so often and hope that takes care of the bacteria….but that is only my best guess how to deal with accumulating bacteria in the lines. I do know you can order new tubing if you contact the manufacturer. Kate

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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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I’m far from being an expert on Mac but I don’t think steam rooms or hot tubs are good if you have Mac. There are other ways to loosen your chest that don’t compound your respiratory issues.

Using a nebulizer with saline is probably the best way to go but there are so may people on this forum who will have good suggestions for you.

Good luck!

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@kathyhg

I’m far from being an expert on Mac but I don’t think steam rooms or hot tubs are good if you have Mac. There are other ways to loosen your chest that don’t compound your respiratory issues.

Using a nebulizer with saline is probably the best way to go but there are so may people on this forum who will have good suggestions for you.

Good luck!

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What??!! Someone wants to sit in a hot tub or steam room ? Wow, one other name for this disease is Hot Tub Disease because the MAC is so prevalent in the steam. It might loosen mucous, just enough to let tons of the MAC little devils in, bad idea

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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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@garry I am so sorry for your frustrating situation. Years ago we would say ,”c’est la vie!”. Now” c’est la guerre” seems more appropriate. It is a good idea to loosen that stuff up in order to get it out , but I am sorry to tell you a hot tub is a big no no for MAC patients. Feel free to google that. Hope you feel better soon. No bueno as my daughter says! (Irene5)

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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 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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