1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Jo Ann K | @jkiemen | Apr 18, 2019

Can those of you who took Big 3 over a year, tell me if you had similar things as with my CT of this week. I had improvement last years CT then this week one spot better and one spot worse ( the original area). I don't know if it is forming scarring or just getting worse. Hence being scheduled for Biopsy for more cultures. It is too far down to reach with bronchoscopy.
I hope I get to the day when I can say, here is that last dose.

REPLY
2 replies
boomerexpert | @boomerexpert | Apr 18, 2019
In reply to @jkiemen "@boomerexpert I hope so. My heart just dropped to my feet when I went for my..." + (show)
@jkiemen

@boomerexpert I hope so. My heart just dropped to my feet when I went for my results. I always worry about them finding more and also worry about cancer. The Pulmonologist said he believes it is all MAC. I do not want to wait 2 months to have another CT then possibly end up with yet the same situation and another CT. That is too many trips under the scanner. I would like to have the cultures done and continue to hope for research to come up with some better options. I appreciate that you are there to read and give advice.

Jump to this post

You've been poorly or mis-medicated...also recommend you find new doc who fully understands MAC and latest science of it.

REPLY
1 reply
boomerexpert | @boomerexpert | Apr 18, 2019
In reply to @becky33 "Today is a big day in my life!!! I take my last does of 9,300 mg..." + (show)
@becky33

Today is a big day in my life!!! I take my last does of 9,300 mg of antibiotics a wk for 27 months!!!!!!!!! Can't wait to see what "normal" feels like without all these antibiotics in me. It took 15 months before I got a negative sputum test back and my Dr Adam Anderson at Washington University, St. Louis, Mo wanted me to take the meds for 1 yr after the first negative sputum test for MAI. This journey has been a looooooooong very loooooooong one and not for sure when it even started because I've felt so bad for so long before I was diagnosed with MAI. I had been treated for asthma/COPD/lung infection etc etc etc for over 10 yrs before I was properly diagnosed. Was very lucky tho because during all the testing being done to find out why my lungs were infected all the time a tumor was found on my kidney so had to have that removed and also during testing discovered that I was among the 5% of people who do not respond to acid reflux meds so also had to have a Nissan Fundoplication operation to correct the acid reflux. Thought that would correct all the infection and coughing but didn't so still more testing. In one 12 mo. period I was on antibiotics and steroids 19 times!!!! I would do OK while on the meds but within 3 or 4 days being off of them I'd start coughing and being infected again. Finally after so many dr's I lost track I was sent to the right one who tested me for MAI and now FINALLY hopefully my MAI journey is ending as of tonight when I take the last dose of the big 3. I can now breathe, I can ride my bike, I can dance and I can walk 2 to 3 miles with no problems and I'm 75 yrs old!!!! So please pray that there are no hidden bugs hiding in my lungs just waiting for the antibiotics to cease so they can start growing again. I feel blessed and I feel good!!!

Jump to this post

YAY!!!

REPLY
mariierod123 | @mariierod123 | Apr 18, 2019
In reply to @jkiemen "Can those of you who took Big 3 over a year, tell me if you had..." + (show)
@jkiemen

Can those of you who took Big 3 over a year, tell me if you had similar things as with my CT of this week. I had improvement last years CT then this week one spot better and one spot worse ( the original area). I don't know if it is forming scarring or just getting worse. Hence being scheduled for Biopsy for more cultures. It is too far down to reach with bronchoscopy.
I hope I get to the day when I can say, here is that last dose.

Jump to this post

Thats exactly what im being told they said it was gone now they saying i have a spot they cant reach and need to do a biospy we find this ver odd what are you doimg about it?

REPLY
america | @america | Apr 18, 2019
In reply to @jkiemen "Can those of you who took Big 3 over a year, tell me if you had..." + (show)
@jkiemen

Can those of you who took Big 3 over a year, tell me if you had similar things as with my CT of this week. I had improvement last years CT then this week one spot better and one spot worse ( the original area). I don't know if it is forming scarring or just getting worse. Hence being scheduled for Biopsy for more cultures. It is too far down to reach with bronchoscopy.
I hope I get to the day when I can say, here is that last dose.

Jump to this post

Hi jkiemen. I also took the big 3! I only did 6 months and my scans also showed some some better and some worse. I even had cavities in there. That’s 4 years ago and then I wasn’t being treated until last year. I also have pseudomonas and I am now being treated for that. I am now at at Mayo Clinic and my doctor is great with Mac so I have hope and I don’t always have the best report but I am looking forward to enjoying life whenever I have good days. Mac is still growing slowly in my lungs and I’ll need to treat soon. Hang in there! This is a long journey and with friends in this group it’s is encouraging. I wish you the best! Hugs to you Rita.

REPLY
1 reply
Helen L/Orlando | @hsletter | Apr 18, 2019
In reply to @america "Hi jkiemen. I also took the big 3! I only did 6 months and my scans..." + (show)
@america

Hi jkiemen. I also took the big 3! I only did 6 months and my scans also showed some some better and some worse. I even had cavities in there. That’s 4 years ago and then I wasn’t being treated until last year. I also have pseudomonas and I am now being treated for that. I am now at at Mayo Clinic and my doctor is great with Mac so I have hope and I don’t always have the best report but I am looking forward to enjoying life whenever I have good days. Mac is still growing slowly in my lungs and I’ll need to treat soon. Hang in there! This is a long journey and with friends in this group it’s is encouraging. I wish you the best! Hugs to you Rita.

Jump to this post

@america. Which Mayo Clinic do u go to and who is the doc please?

REPLY
1 reply
america | @america | Apr 18, 2019
In reply to @hsletter "@america. Which Mayo Clinic do u go to and who is the doc please?" + (show)
@hsletter

@america. Which Mayo Clinic do u go to and who is the doc please?

Jump to this post

Hi I go to Jacksonville Mayo!!

REPLY
1 reply
Jo Ann K | @jkiemen | Apr 18, 2019

@mariierod123 I am proceeding with the biopsy. I want to make sure exactly what it is, what is the best antibiotic etc. My pulmonologist said. MAC makes nodules so this is part of the pattern. I was hoping the pattern would stop with the treatment I have been on already but it didn't happen. He said he it could be a granuloma.

REPLY
1 reply
Helen L/Orlando | @hsletter | Apr 18, 2019
In reply to @america "Hi I go to Jacksonville Mayo!!" + (show)
@america

Hi I go to Jacksonville Mayo!!

Jump to this post

@america Which Doctor? In 2012 I saw Dr. Arunthari there who only prescribed Levofloxacin if my cough got worse and albuterol inhalation (which I stopped because it made my heart race). So, over the years since, I probably took the antibiotic 10 times a year....but I wish we had known that it only treated symptoms and not the bacteria itself. I have suffered with MAC since 2006 and they knew I had it but that's all he did. Maybe that's all they knew to do back then. Haven't been back there since. Just got on the antibiotic regimen this past month following a bronchoscopy revealing nodules, etc. Already feeling much better!
I live in Longwood, north of Orlando. And you?

REPLY
2 replies
america | @america | Apr 18, 2019
In reply to @hsletter "@america Which Doctor? In 2012 I saw Dr. Arunthari there who only prescribed Levofloxacin if my..." + (show)
@hsletter

@america Which Doctor? In 2012 I saw Dr. Arunthari there who only prescribed Levofloxacin if my cough got worse and albuterol inhalation (which I stopped because it made my heart race). So, over the years since, I probably took the antibiotic 10 times a year....but I wish we had known that it only treated symptoms and not the bacteria itself. I have suffered with MAC since 2006 and they knew I had it but that's all he did. Maybe that's all they knew to do back then. Haven't been back there since. Just got on the antibiotic regimen this past month following a bronchoscopy revealing nodules, etc. Already feeling much better!
I live in Longwood, north of Orlando. And you?

Jump to this post

I have dr leventhal! He knows more than any dr I’ve seen in the past. He gives me choices and he’s very caring! I see him next month and we’ll discuss treatment for Mac! I hope for the best and see what comes up! I also live in the Tampa area so you somewhat close 🙂

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.