(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@columbine

May your doctor be of help with your decision. I am finding it very difficult to decide.
I would really appreciate any insights. Healing thoughts sent your way.

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Hi, saw my family Dr. today. He said I should at least try the meds. Space them out over two week periods to that I can determine which one, if any gives me side effects . I am also going to consult with an infectious disease Dr. just for more insight etc. Certainly can't hurt. I will keep up my routine of vitamins, and probiotics and see how it goes. I'm 75 and thought maybe it wasn't worth putting myself through the meds etc. but I am a very active 75 involved in a lot of things, President of my Garden Club etc. so it's worth giving it a shot. Some people do very well on the meds and other's don't. It's a gamble, but isn't everything we do in life somewhat of a gamble. Wishing you well in whatever you decide. Keep me posted!

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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.

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@bbeers

Hi, saw my family Dr. today. He said I should at least try the meds. Space them out over two week periods to that I can determine which one, if any gives me side effects . I am also going to consult with an infectious disease Dr. just for more insight etc. Certainly can't hurt. I will keep up my routine of vitamins, and probiotics and see how it goes. I'm 75 and thought maybe it wasn't worth putting myself through the meds etc. but I am a very active 75 involved in a lot of things, President of my Garden Club etc. so it's worth giving it a shot. Some people do very well on the meds and other's don't. It's a gamble, but isn't everything we do in life somewhat of a gamble. Wishing you well in whatever you decide. Keep me posted!

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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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It'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.

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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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@lauraadam2425

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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Hi! 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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@tcd518

Hi! 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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Thank you for the info. It is surely an option to think about. Glad you had a good trip.

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