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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- 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
- 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!
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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
@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
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.
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
@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.
@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
I have the shower head that you can flip open. Do you think I need to soak it with vinegar? I wipe it down after every use with a vinegar cleaning solution that has vinegar in it.
@tinaesims What you are doing now sounds sufficient to me. You have the added benefit that your shower head opens to dry. I feel like you are in good shape on the course you are on.
@sueinmn I try to do mine every six months. I am having my water tested this month.
@sueinmn I try to clean my showerhead every six months. (BTW, I am having my water tested this month.) I buy the industrial cleaning strength vinegar at Lowe's hardware store.