(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.

Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017

In reply to @heathert "@windwalker I found this article, it states that Thailand is doing lung stem cell treatment already,..." + (show)

Hello Rosemary. I have been going to the Jacksonville Mayo for four years now. They are the best, which is why I chose them. I finished up pre-qualifying transplant tests this past Dec. 2016. I am qualified, but on deferred list. Have to wait out disease progression to get a little worse before I can be listed. I do attend the lung transplant support group at the Mayo when I can. They are a GREAT bunch! I have known for years that I may possibly one day need a transplant; so, I have investigated it thoroughly. I am thankful for this site as it is always good to have support, understanding, empathy, new knowledge, etc. Thank YOU, and ALL of you for being here! - Terri M.

Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017

In reply to @katemn "Posted by @decosmo in MAC & Bronchiectasis, 4 hours ago Hello All, I hope you had..." + (show)

I hate to keep reiterating this, but, ask about going on tobramycin. It is inhaled and only goes to the lungs; sparing your stomach. That is what I am on right now. It doesn't get prescribed much because it is wickedly expensive and I think it is a recent discovery that it works on MAC patients. It has been used mainly for those with cystic fibrosis to keep the opportunistic mycobacteriums at bay.

Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

Welcome @caroldelanelittleld! We are absolutely here for you. The diagnosis of MAC is scary at first. Stay on top of it, take it seriously, and learn all that you can about it. My advise is: don't let it rule your life. Take care of what you can with it; then live your life.

irene5 Irene Estes | @irene5 | Mar 5, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

Very well said! Accepting new limitations has been hardest for me, but as my mom once said, "It's all in the attitude, my dear!" That's easier said than done some days, but practice makes perfect! By not letting any disease define who you truly are helps you be the one in control! Irene

Rosemary, Volunteer Mentor | @rosemarya | Mar 5, 2017

In reply to @heathert "@windwalker I found this article, it states that Thailand is doing lung stem cell treatment already,..." + (show)

Terri, Thank you for the reply. I agree. You are in the best place for your treatment. I think it is terrific that you have a support group that you can connect with. I live 800 miles away from Mayo in Rochester where I transplanted. Here at my home there is no such group.
If you have not already done so, I encourage you to look into The Gabriel House of Care for housing.
Waiting to get sick enough before you can get better is a real bummer! I am happy for you that you have already been evaluated and approved. I'll be thinking of you.
Rosemary

Katherine, Alumni Mentor | @katemn | Mar 5, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

@irene5 .. Irene, you are one lucky woman to have had such a wise Mom! Love what she told you! I totally agree as you know .. MAC is just a piece of who we are .. it is NOT "who" we are! Hugs to all! Katherine

Katherine, Alumni Mentor | @katemn | Mar 5, 2017

In reply to @katemn "Posted by @decosmo in MAC & Bronchiectasis, 4 hours ago Hello All, I hope you had..." + (show)

@windwalker, Terri, I don't think it hurts a BIT to mention again "It doesn't get prescribed much because it is wickedly expensive and I
think it is a recent discovery that it works on MAC patients" .. since you know from personal experience that it is a recent discovery .. that means many doctors may not have made the connection yet with MAC patients. We DO need to be our own best advocates .. as we ALL well know! Hugs! Katherine

heathert | @heathert | Mar 5, 2017

In reply to @katemn "Posted by @decosmo in MAC & Bronchiectasis, 4 hours ago Hello All, I hope you had..." + (show)

thanks @windwalker, good to know another antibiotic that works on these nasty bugs.There needs to be some sort of system between all MAC doctors, so they are all in the know.

tessie | @tessie | Mar 5, 2017

In reply to @caroldelanelittleld "I am new to this group....also new to the disease" + (show)

@windwalker I appreciate your advise 'don't let it rule your life'. This kind of boast helps a whole bunch on the pill procedure, and you take care too. Thanks!