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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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Hi Ling: thank you, helpful. Yes the first time very scary. I actually do feel better talking on the forum. So funny, when it happened yesterday, I took shower, cleaned house, fed dog, left extra water, unlocked everything, even did my toenails. Thought to myself, I am clean, I am ready, do your worst!....Then when nothing happened, I said, oh phooey, I'll take stupid pills. I can already feel them in my gut! I think I'm going to try just taking them twice week instead of 3 times. Don't see docs for a few months, it's an experiment. Maybe I can slow down growth a bit. Katherine said to keep exercising, good advice, though I thought I had an excuse to stop! haha. Anyway thank you all for support. It really helps a lot!
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3 ReactionsWith understanding the impact of the meds on our systems and our feelings about that, when we start and stop the meds periodically, I think there is a high chance of MAC becoming resistant to them.
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1 ReactionI know, been told that by the docs, but, I don't feel I have any choice. Have to take my chances.
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1 Reaction@unicorn .. Christa I am really worried about your start/stop antibiotic routine. With ANY antibiotic we are told to take for the FULL 7/10/14 day schedule to avoid resistance antibiotic being built up. I am REALLY concerned that if you continue to do this .. NO MAC/MAI antibiotic cocktail is going to WORK for you in the future!! This really does scare me for you! We have ALL dealt with initial side effects of the MAC treatment .. TOUGHED THROUGH it .. gutted it out .. tough as it was .. came through on the other side .. it DOES get better!! IF you allow your FEAR TO CONTROL you .. you may end up like other of our Members who are AWAITING A DOUBLE LUNG TRANSPLANT!! I DO SAY THIS to scare you!! What do you want .. side effects NOW .. OR awaiting a double lung transplant later because you wouldn't deal with the TEMPORARY "The pills (the big 3) wipe me out" .. Christa .. I don't mean to be too tough on you .. it is ONLY because I care this much to take the time out of my day to write this!! I could be doing a LOT of other things!! What I want you to do is call your doctor's office and get an EMERGENCY appt!! You need medical advice on what to do NOW .. NOT making your own decisions to start/stop your MAC antibiotics on your own. We are NOT doctors .. you need to take good care of yourself .. get good medical advice .. I am concerned for you .. I hope you understand my caring. Sending you a Big Hug! Katherine
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1 Reaction@unicorn Although I have experienced hemoptysis twice in the past 2.5 years, I do not have other symptoms other than excessive mucus and I'm otherwise pretty healthy and active with no serious underlying diseases (except bronchiectasis of course). For that reason, my pulmonary specialist told me that whether to take the antibiotics long-term would be my choice and was not mandatory. I opted for not taking them for now and would only consider it when/if my condition worsens to the point when drugs are necessary. He thought it was the right decision. As I understand you have been taking the antibiotics but not continuously. Did your doctors tell you that it was necessary when they prescribed them to you? Other than coughing up blood, are you having other symptoms? Do you have underlying diseases that make taking these drugs a necessity? I'm asking these questions because many people on this site do have other ailments that are making it necessary to control their bronchiectasis/MAC with these drugs and I'm curious whether there are those like me who have been diagnosed with bronchiectasis and/or MAC but without underlying diseases but are taking these antibiotics. If there are, what the reason for them or for their doctors to decide that they need to take these drugs.
To Katherine - I have learned a great deal by your particular situation of sputum results. My question is: how long was it between the time you received the actual test results showing the 3 new bacteria, and the time you began to feel very sick? Pamela
@unicorn .. Christa Just found a GREAT explanation/video on Bronchiectasis and why the blood!! Watch it .. SO glad I found it!! Hope it helps you! Hugs! Katherine
https://www.youtube.com/watch?v=YeomndWSom8
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2 ReactionsDear All, for anyone who has not had time .. or access .. when you do .. PLEASE take the time to watch the videos .. such a wealth of information! I just watched two of them .. WOW! Hugs to all! Katherine
https://www.nationaljewish.org/ntmvideos
https://www.youtube.com/watch?v=U1ZmJAQlgLw
https://www.youtube.com/watch?v=YeomndWSom8
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1 Reaction@pamelasc1, Pamela .. for me .. the reason I requested the report was BECAUSE I was so ill. I NOW know to stay on top of the reports .. request them more frequently .. AND question any words on them that I do not understand. ie .. I just did and emailed that there was one that had FIRST appeared 10/14 .. and now 5/17 showed "Few" meaning Few Colonies .. AND asking if/when it should be treated? I am NOT a doctor to be deciding if/when something should be treated but I have certainly learned to ask more questions .. the hard way. Do NOT want to alarm our Connect Members .. just educate them to advocate for themselves better than I did in the past! (sometimes the "Mentor" has not follow her own lessons!) Hugs to all! Katherine
I have also had hemopytsis - several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by 'plugging' the blood vessel. Just wanted to pass that on. Jan
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