(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.

Kay Strand | @kaystrand | Aug 13, 2017

In reply to @heathert "Hi all, its winter here and I have been in contact with someone with Respiratory syncytial..." + (show)

Heather
Last winter my doc at Mayo gave me Doxycycline to take on top of the big 3 in case I got a virus. This was to prevent eventual pneumonia I always get. I did get very sick with a fever and resp symptoms and took them. I got a sinus and bronch infection but no pneumonia. She thought since it was Maybit was RSV perhaps that started it all.
Now she gives me a script of it I keep on hand in case I get another flu bug. Of course flu or RSV can't be cured with antibiotics but it can take care of residual bacterial infections like sinuscwe getvfrom the flu. I think it's a good idea and so does doc, to keep them on hand.
Kay S

irene5 Irene Estes | @irene5 | Aug 13, 2017

In reply to @heathert "Hi all, its winter here and I have been in contact with someone with Respiratory syncytial..." + (show)

That's probably a good idea because doxy is helpful for bronchiectasis. Smart doc!

LauraL856 | @laural856 | Aug 13, 2017

Do any of you on the "big 3" have a preferred probiotic that you take to in conjunction with the antibiotics?

Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2017

@laural856, Hello Laura! I see that you are a 'newbie' on our forum. Welcome aboard! Other members may jump in with recommendations, but recently, I saw where someone really liked a brand called 'Renew Life' probiotics. It has 30 billion live cultures. Be sure to space your probiotics two hours apart from the time you take your antibiotics. That way they are not battling each other, and it gives the probiotics time to multiply and get situated. So glad you found us!

irene5 Irene Estes | @irene5 | Aug 13, 2017

In reply to @laural856 "Do any of you on the "big 3" have a preferred probiotic that you take to..." + (show)

IMD complete probiotics on Amazon is a tad pricey but good.

irene5 Irene Estes | @irene5 | Aug 13, 2017

In reply to @windwalker "@laural856, Hello Laura! I see that you are a 'newbie' on our forum. Welcome aboard! Other..." + (show)

That's a good one too.

colapyrus | @colapyrus | Aug 13, 2017

@laural856. I've been taking Jarro-Dophilus EPS as recommended by Dr. Huitt at NJH. I take 2 in the am and 2 at dinner. They are room temp stable and have 5 billion per capsule. They also have a coating that is suppose to make the capsule get past the stomach and into the intestinal tract. So far they have been doing the trick but I've only been on the antibiotics for 2 months. Jan

heathert | @heathert | Aug 13, 2017

In reply to @heathert "Hi all, its winter here and I have been in contact with someone with Respiratory syncytial..." + (show)

Thanks Kay sounds good. I will go and get a script.

Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2017

@irene5, Thank you, Irene. I have added that to my probiotic list.

Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2017

In reply to @jennifernicole "Hello, I have been reading through these posts for the past several weeks and have learned..." + (show)

@janovr, Hi Jan! We haven't heard from you in awhile. Are you doing ok? Last I remember is that you could not tolerate your meds. What did you end up doing?

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