(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
<br><br><br><br><br>Hello. I am so glad you are getting treatment that works for you. You are <br>fortunate to have found a competent doctor. I have been battling lung <br>issues since I was 35 yrs old (am now 58). I went to local <br>pulmonolgists all of those yrs. Every time I would get a flare up of lung <br>infection; I would be put on a two week round of antibiotics and that was it. I <br>would become sick again, same routine. After 20 years of not knowing why I was <br>sicker than other people, I decided to go to a non-profit teaching institution <br>where I knew they would be interested in finding out why I was chronically sick. <br>Turns out, I have a genetic disorder that even the Mayo cannot figure out, but <br>they DID know to put me on alternating monthly prophylactic antibiotics. We are <br>not all standardized with 'MAC' or bronchiectasis, there sometimes are other <br>underlying diseases that are bringing these on. Sometimes it takes a highly <br>specialized doctor to figure it out. There are no competent pulmonologists where <br>I live now. I honestly don't think I'd be alive if I had not gone down to the <br>Mayo.<br> <br><br>
Yep! Ditto that! My mom, my aunt, and now me!! Irene
Hello - I thought I'd post an update as my ID Drs here in NE were unsure if there was a protocal to be desentatize to one of the drugs I found out I was allergic to last fall. As I was weened off predisone, for an autoimmune issue, I started developing an itchy rash to Ethambutol. My ID Drs put me in touch with an allergist. Depending on what she says about me having RSV right now, I am supposed to be desentized a week from today. The allergist says she's never done this particular drug before, but has done a lot of others. It'll take all day at an outpatient center and maybe a part of the next, will have to see since she hasn't done this one before. I should note I have had clear cultures of MAC since August and I've been off Ethambutol since mid Oct. My timing of my mayo clinic trip, the holidays and restricted days the allergist does this have resulted in the longer than normal wait, but was assured by my ID Drs that a few months in the world of MAC isn't bad because of how slow it grows and my last cultures in Nov were clear. I know I haven't read ALL information on this page, but wonder if anyone has been desentized to this drug before and how it went for you? (I know results are different for everyone). Thanks.
@windwalker, Terri, I am SO curious! You said .. 'I got opinions from three drs when first diagnosed with MAC on whether to
do the three drug treatment. Two out of three said they would not do it because there is only 50% chance it would work and it is hard on the liver.' Were the THREE doctors you are talking about INFECTIOUS DISEASE doctors knowledgeable about MAC?? You are now a smart cookie having done your 'due diligence' here on our Forum so you well know if/or NOT a doctor was/was not knowledgeable about MAC. I am really curious .. in retrospect .. do you think they told you correctly??
I am wondering because now Mayo IS treating you properly with antibiotics .. BUT you say .. ' I may need a lung transplant in the near future' .. my question is: IF your THREE DOCTORS had NOT told you NOT to do antibiotics initially .. MAYBE might not need a lung transplant now??
Just wondering .. because I know I refused antibiotics out of fear initially .. UNTIL I got a SECOND serious mycobacterium. Just wondering if your mycobacterium colonized more because like me you didn't go on the antibiotics soon enough? What is done is done .. but it would be good information for our Forum. Hope you don't mind me asking! Hugs! Katherine
@windwalker, Terri, that you have a genetic reaon is so interesting! I have mentioned before that I showed Dr. Aksamit a report from 23andme my what doctors refer to as a 'spit test' .. that showed I had a genetic predisposition to lung issues .. he did NOT laugh at me .. in fact was interested . and asked if he could keep the copy of the report. INDEED I am convinced someday they will find genetic connections between MAC and many other diseases!
Thanks heavens you came to Mayo .. 'mecca' to many in the world! Hugs! Katherine
Terri, really good information for our Forum .. thank you! Hugs! Katherine
@tdrell, Terri, you're just getting too smart! I had to google to confirm it .. but you are correct!
SPUTUM CULTURE FOR MAC
In patients who may have pulmonary infection with Mycobacterium avium complex (MAC), diagnostic testing includes acid-fast bacillus (AFB) staining and culture of sputum specimens. If disseminated MAC (DMAC) infection is suspected, culture specimens should also include blood and urine
The Notes I have on GERDS:
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in Denver * The reason MAC was found in my lungs when I had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept plus silent aspiration during day into my lungs. * .....Gerd fluid restriction is 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs.
*my understanding .. the connection between GERDS and MAC .. is that what gets into the lungs from the GERDS .. becomes a 'breeding ground' for the mycobacterium .. just like the sputum from Bronchiectasis becomes a breeding ground for the mycobacterium. So it really isn't the 'damage' .. it is really material that sits there and becomes a breeding ground for the mycobacterium because it is 'foreign' .. NOT expelled in a normal bodily process.
On hot tubs and showers: the THEORY .. no prove research is that when the water is "aerosolized" it is breathed into the lungs .. if there is sputum in the lungs .. the sputum becomes a breeding ground for the mycobacterium as the "aerosolized" water gets into our lungs.
Same with soil .. as you garden .. as the soil is disturbed it becomes "aerosolized" .. same process in theory,
@chinasmom .. Thank you Becky .. it is nice of you to say that! When our 'Boss' Colleen told me that for each person that actually posts .. that we have hundreds of 'silent observers' who read our Forum .. I was just blown away .. I had no idea! I away say that I just stay here in my own little world trying to make a difference by helping people on my own same journey .. I thought it was just our own little group. It is really nice to know we are all helping so many more we don't even know about! Glad to know we are helping you in some small way. Sending YOU a hug! Katherine
<br><br><br><br><br><br><br><br><br><br><br><br><br>Hugs,<br> Katherine<br><br><br><br><br><br>
Dear Katherine....any and everything I know about MAC etc is due to the motivation acquired from you! Terrid.