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(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!
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I think you were SO smart to fly from the East Coast to Minnesota Mayo Clinic! My attitude is that we are given one body in this life time .. I am willing to use my financial resources to take care of that body best I can! Good for you! Beg, borrow .. NOT steal to take care of yourself!
Nan, I so agree .. I just wish I'd found a forum like this when I was first diagnosed .. I was SO scared! If I'd read the past notes on this forum It would have helped SO much in gaining knowledge about our disease .. it would have made my journey SO much more serene. Frankly that is why I spend my time on the forum .. it is kind of like my form of volunteering. Can't think of a better use of my time .. helping people on the same journey that was so scary for me! If I can help just one person it will be all worth it! Plus I am learning from everyone at the same time ... win/win!
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3 ReactionsKathryn, You indeed are volunteering for many appreciative people on this journey. I found a new doctor who specializes in NTM through the same volunteer efforts of a lady in Atlanta who is now testing negative for NTM!<br />
So grateful and thankful for all of you!<br />
Jan in GA<br />
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Thanks @katemn and @ehliny for your experiences about not starting the drugs if you're not really sick. This is tough because my pulmonologist, I believe is following the recommendations...like what the textbook says sort of...but is probably not as well versed on the subject as doctors in Denver and Minnesota...I've talked to my closest friend tonight, who is a doctor (not a pulmonologist) and she's going to talk to some pulmonologists she knows where she is in California and I'll guess I'll decide by the end of this week whether to pull out. There's this part of me, though, that says if you wait...won't you just get sicker and then it's harder to get rid of? Nan in SC
I do not know your whole story, but taking antibiotics also removes<br />
the good bugs in your system, therefore leading to more problems. only<br />
take the med for as short a time as necessary, or not if dr says do<br />
not.<br />
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1 ReactionHi. This is only my 2nd time writing on this site. I have been diagnosed with MAC about a month ago, and now see a pulmonologist & a infectious disease Dr. I start my cocktail of meds on 5-2-16. Actually, I should have started them this week, but I am having such panic attacks that I am waiting until Monday, I am sooo scared. I am a caregiver to my elderly parents who are sick and an adult (34) yr old son who is handicap. I am afraid I will be too sick to take care of them. I have never been this scared in my life. I have decided if the meds, all 4 to start with make me to ill, I am going to stop taking them. I can't imagine being so sick for the next 18 months. I think I would rather die. I am just a mess and cry constantly. Ok, I won't bring my problems to this anymore. I just needed to get this off my chest. SCARED!!!!!
I am new to this site and would like to participate in the discussions. Would like to hear from someone, I have the MAC and bronchiectasis also. e345l
@cacallahan, this is exactly the place to bring such problems. Here is where you can talk frankly about your fears and concerns with people who've been there. Tell us a bit more about the meds you'll be taking and what concerns you the most.
What 4 medications will you be taking?
What side effects have you been told about? Which ones concern you the most?
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1 ReactionWhat 5 antibiotics were you taking Katherine? I saw that in a previous<br />
post, am new to all this so I hope I am replying right. Has your skin ever<br />
turn bronze from using rifabutin for 9 months? I was on 3 but at a stand<br />
still now as it didn't stop the MAC. Don't know what is next. e345l<br />
Hello 3451, no my skin did not turn bronze .. that might have been an advantage to this boring pale faced person .. BUT I was warned that my urine would have a golden cast .. which it certainly did!
In terms of the antibiotics .. keep in mind that each of us have INDIVIDUAL diagnosis! My diagnosis INCLUDED in addition to the MAI/MAC a SECOND mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES which is difficult to treat!
I started 10/11: Ethambutol 800mg/ Azithromycin 250mg/ Avelox 400mg/ 2-Rifampin 300mg/ Amikacin 2ml-inhaled 3x week(5xwk until 10/12) I was taken off Ethambutol 800mg 02/12 when I began to lose color and distance vision. It took about a year but I got back nearly 100% of the vision back because I had a wonderful Ophthalmologist who caught it early! How I realized the loss was that we were on a road trip .. I realized I could not read the green street or overhead freeway signs as quickly as my husband when we “tested” my vision. I immediately made an appointment. She took me off the Ethambutol 800mg as a probable cause and as I said .. it took about a year .. but my color and distance vision did return .. for which I was very grateful.
KEEP IN MIND .. because it happened to me .. DOES NOT mean it will happen to you! Each of our bodies are different and we will react differently .. like beautiful snowflakes .. we are uniquely different .. that is the beauty of our lives! Go in serenity!
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