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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I don't know if this fits your medication but I asked my retinal specialist which part of the eye antibiotics from my pulmonologist might affect and she said the optic nerve. I had been diagnosed the day before with MAC.
Hi, I read this and thought this could have been me writing it. I am 75, President of my Garden Club and was recently diagnosed with MAC. I am currently waiting to get in to see an ID Dr. and seeing a new Pulmonary Dr. next week. My first Dr. wanted me to start all 3 Drugs at once and I refused. I am not having any symptoms yet but have decided that if the new ID Dr. wants me to start meds I will as long as I can space them out in the beginning. Wishing you the best.
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1 ReactionIt's a very good idea to space the meds out when first going on them. I had 2 weeks between each new med. I did have a bad reaction to one of them so it was a good plan for me.
I am on Azthromycin, Rifamkin and now Arikace with a nebulizer. I am going to Europe next July and there is no way on a small river cruise that I can sterilize the items ect when I have a strict 50 lb weight limit and no way to get distilled water ect. Has anyone been on this medication and stopped it for a few weeks and then picked it up again?
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1 ReactionHi! I was on a two-week (Viking) river cruise in France this past June and brought along my Pari Trek-S, Aerobika, and a small bottle of Dawn detergent. I asked for distilled water to be delivered daily and washed the various parts in the ice bucket, which was just the right size. Every four or so days I disinfected with hydrogen peroxide, which I bought when we first flew into Paris. The whole thing turned out to be easy-peasy. Maybe call your tour person ahead of time and ask if they can provide you with distilled water and if there's a microwave on board you can use? We had a wonderful time, and I hope you do too!
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5 ReactionsThank you for the info. It is surely an option to think about. Glad you had a good trip.
I was diagnosed with MAC a year ago. Other than shortness of breath I have no symptoms, but 3 CT scans by my pulmonologist have shown the MAC worsening. He's referred me to an ID doctor to start treatment, but I'm uncertain that's the right thing to do. I'm 83, live in a Continuing care community where my husband is in a nursing home and I have much responsibility for his care. I'm not sure what to do. Any thoughts?
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3 ReactionsThe meds will be antibiotics that have side effects. At your age, personally I would stick with ACT's (airway clearance techniques) and nebbing saline. If you start having symptoms then you could go for the drugs at that time.
God Bless
Cheryl
You mentioned your doctor finding "another Mycobacterium " what do you mean by that?
Cheryl
I too have rheumatoid arthritis and was on Humira for 13 years. Had to stop it in 2019 when I was infected with haemophilus in my lung. Now I am infected with something else, mac so far is negative. They are still testing. I stopped the methotrexate now too. Make sure you have a pulmonologist who understands BE. No need for a visit to a special facility if you have that.