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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, I have a question please. Do you cough a lot if you have MAC. If you do is the sputum clear and thick?<br><br>
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1 Reactionyou caught something during the bronch? I wonder if I got either the lung fungus or the nocardia from my bronch?
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1 ReactionThanks! Good to know. Kathryn
Hey, all! I've sent a letter to the Tampa Bay Times editor to shed light on our collective plight (eg the lack of research for more effective, less side-effective treatments) - mine was in response to a Dr. who'd written about how easily preventable Zika is amid all the hype - took advantage of the opp! If you like it, feel free to use it as a template for outreach to your own local news media...when enough of us do this, eventually someone will listen! Here's the link to a copy of the letter I sent (toward the bottom of the page): https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/?pg=2#post-233589
@boomerexpert...Great letter! I think you should send it to the New York Times! Seriously. Thank you for taking the time it write it! Nan
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1 Reaction@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @digmeme .. Linda, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @melissa23 .. Melissa, @mimi68 .. Mimi, @Paula_MAC2007 .. Paula, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa
Hello All! I am back from my holiday .. refreshed and raring to go .. wanting to check in with each and every one of you to see just what is going on in your lives .. how you are doing .. how you are progressing .. how things are going.
Please check in so I don’t worry about you .. just a short note to let me know your current status.
I want to thank each of you that jumped in to watch for new people on our Forum while I was gone .. so kind of you. It is so important that we are there for each other on this our shared journey .. you do it well .. again .. thank you!
I am well .. did just great on my trip other than having to explain over and over again that my coughing was NOT contagious. Frankly on my next visit with Dr. Aksamit I am going to request a simple statement that my 3 lung diseases are NOT contagious whether I am coughing or NOT coughing! For whatever reason I tend to cough a LOT in enclosed spaces. Be it in a restaurant .. taxi .. bus .. theatre .. airplane .. whatever. I found a little device: Air Supply Mini-Mate Personal Ionic Air Purifier
https://smile.amazon.com/Supply-Mini-Mate-Personal-Ionic-Purifier--Black/dp/B000B6CMZ4/ref=sr_1_1?ie=UTF8&qid=1474246233&sr=8-1&keywords=mini+mate
held up to my nose helps greatly .. for whatever reason! It is supposed to clean the air. I don’t really care how/why it helps me not cough .. I just know it does .. so I pull it out in enclosed spaces and it helps every time! So that is me .. let me know about you! Sending hugs to all! Katherine
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2 ReactionsGlad you had a good trip. I've had a bronchcospy done, but results are pending yet. The reason Lung dr suggested it was that I've been on the MAC 3 antibotics for almost 4 months now and I'm still having fevers in the evenings. If this doesn't show results they will suggest an open lung biopsy. I'm hopingit doesn't come to that. I also had an ENT look at vocal chords as my voice has been 'squeaky' for last 4 months. He said they were a little inflammed and he could see redness where they were irritated from coughing, but nothing else. Did a ct scan of sinuses but all clear. So not sure why I have a squeaky voice, but it exhausts me to talk sometimes.<br><br><br>
I have a chronic cough but I've been told it was from Reflux. I had the surgery back in 2008 and the cough went away after 18 horrible years. I had silent reflux which means no symptoms and back then they didn't know coughing was a symthom. I had cervical spine surgery in April and guess what the Surgeon must have messed up my Reflux Surgery . I know have reflux in the throat and coughing. I'm on Nexium in the am and Zantac at nite. Hopefully that will fix the problem!
Jillnc....have they ruled out perhaps a fungal infection of some sort? Terri d
jilnc, so glad to hear from you! Is your name Jill? Seems funny to refer to you as jilnc!
Interesting that you are still having fevers .. I can only speak for myself .. but that did not happen to me so have no reference. In terms of the "squeaky" .. are you on an inhaler? I am on two of them and if I don't rinse my mouth intensively it can have a funny affect. PLUS a kind of weird thing .. after being on the 4-5 antibiotics for thirty months .. my voice was just plain not normal. I decided to google a "speech pathologist" .. when I met with him it was VERY interesting!
One of the first things he asked me was the position of my tongue .. I don't know if it was all the months/years of coughing or what .. BUT the tip of my tongue was toward my teeth. It is SUPPOSED to be back at the "hump" kind of in the middle of your mouth. He had me do a bunch of exercises .. and today I try to be aware of that .. and my voice is back to normal. I am NOT saying that is your issue .. but am just putting it out there in case it might be of interest to you or someone else. I sure know about the exhaustion .. I think the coughing alone is just exhausting! On my trip I pointed out that I have "abs of steel" .. and that no woman of 73 should have abs of steel! But of course it is from all the years of tightening up my body to cough so much! It is very exhausting!
Please give yourself a break during this period .. rest as much as your body tells you it needs it .. just plain be kind to yourself. It is a tough time. Sending you a Big Hug! Katherine (Thanks for checking in!)