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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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It leaves me wondering what the heck to do...after being diagnosed with MAC (& bronchiectasis) & going through what you go through after such a diagnoses (quite an emotional tolll), & being prescribed treatment & actually having meds ready, then to getting a third opinion on whether to start treatment & the expert dr saying, "no, wait until you see "it" on a CT scan"... it leaves me in a very uncomfortable place. I'm so confused...but I just try not to worry about it...which we all know, means...YOU WORRY ABOUT IT!!!
I'm awaiting the results of yet another bronch washings culture obtained May 24th. That means it will be about July 5th when I get the answer. So if it's negative, what does that mean...? We know it can harbor in areas of the lung meaning that you might not get from a culture...(am I right in saying that??). Does is make sense to wait until you see "it" on a CT scan before starting treatment?
I was told that a positive bronch washings culture showing MAC, could never be a containment. Again, I don't know if that 100% accurate, but that's what I have been told & what I have read. If it's lying dormiant in my lungs, just settting up camp, do I wait till the monster strike & then call out the big guns & treat?? That's what I am been instructed to do.
What keeps me awake at night, is the thought that these bugs are living inside me (I truly do get so worked up over this...it's the talk of many of my therapy sessions), & I have to wait until there is actual damage in my lungs before I can treat it!?!? I am in no way saying that I am taking the treatment lightly or that I'm ready to sign up....BUT I am soooo SCARED waiting around for the "possibility" of getting "attacked"!
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1 ReactionThanks for telling your experience with the ER. The first time I coughed up blood, there was a very large amount and I had not yet been diagnosed. They all immediately gowned up thinking I had TB. It was the scariest experience I had every had. Once I was diagnosed and learned that coughing up blood was one of the symptoms of MAC, I saw no need to go to the ER when I had the second episode of coughing up blood. And I was a lot calmer as well. I don't know if the ERs that I have access to per my medical insurance are equipped with interventional radiologists or not. But it is good to have this knowledge so I know to at least inquire if I ever have a bad bleeding that will not stop on its own.
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2 Reactions@ling123 .. Ling, IF you also have Bronchiectasis .. it is also a symptom of that .. not to be concerned either! Hugs! Katherine
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2 Reactions@jentaylor, Jen, you KNOW I care about you .. BUT I am concerned that you are not reading the past pages AND educating yourself .. AND doing your "due diligence". When I read "BUT I am soooo SCARED waiting around for the “possibility” of getting “attacked”!" It makes me VERY concerned for you. Jen, I am being tough on you BECAUSE I care about you. You are putting your energy in the WRONG place. By now you should know my motto of "Put your energy into what you can control .. and LET GO of what YOU CANNOT CONTROL!"
Jen, you CANNOT control IF your reports are going to be positive or negative. What you CAN control is EDUCATING yourself about ALL of our SHARED MAC journey .. we have ALL been down this pathway. If you DON'T educate yourself you will continue to waste your energy on fear. Remember KNOWLEDGE IS POWER
Jen, OF COURSE you must " wait until you see “it” on a CT scan” .. you DO NOT go on the antibiotic treatment until it is needed! "So if it’s negative, what does that mean" .. what it MEANS .. is the mycobacterium is NOT colonizing at this point .. AND you NEED to live your life happily and serenely .. concentrating on your daughter and husband .. getting in that daily one block walk in .. NOT on what you CANNOT CONTROL .. when/if you go on the antibiotic treatment!
Jen, WHY are you concentrating on"What keeps me awake at night, is the thought that these bugs are living inside me (I truly do get so worked up over this…it’s the talk of many of my therapy sessions), & I have to wait until there is actual damage in my lungs before I can treat it!?!? I am in no way saying that I am taking the treatment lightly or that I’m ready to sign up….BUT I am soooo SCARED waiting around for the “possibility” of getting “attacked”!" .. Jen, WHY are you focusing on this instead of your beautiful daughter .. your devoted husband who has been with you through thick and thin? Jen, I know I am kicking your butt .. but after all this time I feel that "Momma" cares enough about you to remind you to start saying your 3 gratitudes EVERY morning and EVERY night .. focusing on what you DO have .. NOT what you don't have! Look around you Jen .. EACH of us can see SOMEONE who has it worse than we do! I'll be honest with you .. when you say "it’s the talk of many of my therapy sessions" .. after just a FEW meeting I personally STOPPED going to my local MAI/MAC group .. I found they had "BECOME their disease" and be darn if I was going to do that! My health is just a PIECE of who I am .. I am NOT my health!! So Jen, as someone you KNOW cares deeply about you .. you know I had to track you down! .. I want you to start educating yourself to our MAC/Bronchiectasis disease .. knowledge takes away all fear! I am taking the time to write this instead of eating dinner so you know I care about you! Get your fanny in gear .. start educating yourself instead of focusing on fear!! Big Hugs! Katherine
@jentaylor Maybe I'm taking it too lightly. But the way I see it, we humans have countless bacteria living in our bodies, some are good for us and some are not. MAC is part of that collection of bacteria, which majority of the population have no negative reactions to. We are the unfortunate few (the number may be growing these days but is still in the minority) whose bodies do not like it. But worrying about it, especially losing sleep over it, serves no purpose except making our lives miserable. For all we know, the bacteria have been in our bodies for a very long time. We just didn't know. So a few days of waiting is not going to make any difference. If your doctors suggest no drug treatment after the CT scan result is back, I would take it as the problem being not too serious. Do you have any problems like shortness of breath, fatigue, etc. that affect your quality of life? The only problem that I myself have, besides coughing up blood twice in a span of 2.5 years, is excessive amount of thick mucous. No shortness of breath and no fatigue. I have chosen to not receive drug treatment. The concern over possible damage to my organs with long-term use of the drugs trumps the concern over MAC getting treated considering there is no cure anyway. My pulmonary doctor agrees with me. Although from time to time I do think about the potential of my MAC getting worse someday and my eventually needing medical intervention, I'm determined to not have it stand in my way of seeking a happy and productive existence for as long as I possibly can. I hope you'll be able to think of things to do that will make you happy and take your mind off of MAC while waiting for the test results.Take care.
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3 Reactions@128128terry11t Terry, QUESTION: for those of us with Bronchiectasis .. might it be a wise precautionary measure to at least call our closest ER .. ASK if they have an interventional radiologist? Otherwise when we get there we are out of luck! Hmmm! Hugs! Katherine
Interventional radiology is a medical sub-specialty of radiology utilizing minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.
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1 ReactionDear All, I can't find the post that said just what the interventional radiologist did to stop the bleeding .. anyone refer me to the post? Appreciate it! Hugs! Katherine (Yes Colleen I tried the Control F but my searching isn't as fancy as yours!)
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1 Reaction@ling123, Ling, thank you for your good advice. As long as you get regular check up and the mycobacterium is "stable" .. there is absolutely no reason to treat .. and when "My pulmonary doctor agrees with me" that means you are working together. Personally I did not go on the antibiotic treatment until I got a second mycobacterium .. unfortunately it was a nasty one .. Mycobacterium Abscessus .. then there was no option. I SO agree with you .. "I’m determined to not have it stand in my way of seeking a happy and productive existence for as long as I possibly can." YEAH for you! Hugs! Katherine
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2 ReactionsYes. My pulmonary doctor does believe that I have had bronchiectasis which eventually caused MAC. Considering how many years when I was producing excessive amount of thick mucous, I may have had brochiectasis for a very long time. But until I started coughing up blood, I never thought of seeing a pulmonary specialist. My PCP had me tested for allergies, which I was tested positive for bee venom, for all kinds of tree pollen, for ragweed, grass, dust mote, etc. I was treated with allergy shots for 5 years. The symptoms did improve somewhat. But never completely went away. I think my allergies served to disguise the bronchiectasis. I was so frustrated with the thick mucous and the coughing that the mucous caused without knowing why. Now that I know what has been causing the annoying symptoms, I actually feel relieved. Like you said, there are things in our lives that we have no control over. But there are also things that we can control, like our emotions, our fear, our ability to live a happy life despite of our medical conditions. And that is all we CAN do. Thank you for all the pep talks that you have given us on this site. You are so much sicker than some of us. Yet you've spent so much time advising us, comforting us and propping us up when we feel down. You should know how much we all appreciate the fact that you are here for us. Hugs right back. Ling
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2 ReactionsThank you for telling Jen all that Katherine. We all have our struggle with this, and we all handle it differently. Some days are better than others, but it is all in our attitude about it. That we have control over!
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