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