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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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Katemn....how was your visit with Dr Aksami???
I am talking about questions folks on this site might have re MAC or NTM That they have that i would ask during the 7 days with National Jewish.tdrell
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1 ReactionTerri, oops! Misunderstood! Good luck! Wrote extensively on my visit today .. but basically STILL STABLE!! YEAHH!! Hugs! Katherine
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1 ReactionThank you for all your information and thoughts. I have had a reprieve from the worst symptoms of my lungs for almost two weeks now and am trying to figure out, now, so where is the source? Air filters need to be changed, I know. I have stopped using air conditioning as it is cooler. So are open windows and cool weather an answer? I also don't have to mow the lawn and do so much yard work. Is it an allergy to grass? I have an appointment with my doctor next week. This after the aborted lung biopsy when the radiologist refused to take samples for fear of collapsing my lung. Apparently my small nodes 7 mm and 9 mm are in an area hard to reach. But, as I have said, for now, I am enjoying the good period and life. Peace.
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1 ReactionIt's quite possible that you have multiple things going on. So eliminate culprits one by one, starting with an allergist, and checking for mold/mildew/other irritating sources in and around your home.
Hello Kathryn, GREAT that you are feeling a bit better! I have been thinking about your post .. this is just me .. but because of my incessant coughing .. I decided to get another opinion a while back .. went to an excellent Allergist to have allergy tests done to figure out just what I was allergic to.. maybe another reason why I was coughing so much.
I already knew from previous allergy testing that I was allergic to mold. I was absolutely POSITIVE I was allergic to dust mites and had done a bunch of things to alleviate dust mites in my home. I was tested for various things including dust mites by the allergist.
To my shock .. NOT allergic to anything much including dust mites! BUT this doctor FINALLY explained to me for the first time just what my diagnosis of “Reactive Airway Disease” meant. His explanation: If someone hits me on the head .. I am NOT allergic to being hit on the head! I am REACTING to being hit on the head! IE .. my bronchial tubes are REACTING .. being irritating .. REACTING to various irritants that I am exposed to! I am NOT allergic to those irritants .. just reacting to them!
Yesterday I asked Dr. Aksamit about this .. WHY I cough so much in enclosed spaces ie automobiles .. sitting in a theatre close to people .. a restaurant booth etc. He said the bronchial tubes can REACT to MANY things .. MANY changes .. even changes in temperature .. humidity ..etc. That my bronchial tubes were REACTING to those changes as I entered a new environment. Ok .. explained.
So, what I am thinking is: first step get an appointment with a GOOD allergist to confirm/deny any allergies you might have. If the doctor cannot come up with any allergies. Then I wonder if you are just like me .. REACTING to various irritants to the bronchial tubes? Sorry .. a real pain in the batooty but things could be worse .. LOTS of worse illnesses we could have .. right?! Hugs to you! Katherine
Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!
I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine
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3 Reactions<br><br><br><br><br><br><br>Hello Kate and all,<br>Since you asked us all to reply, I'm updating you on my status. I was diagnosed with MAC a couple years ago after undergoing a bronchoscopy . About three years ago, while undergoing an unrelated test for my heart, it was discovered that I had lung nodules.<br> Because I did not have symptoms at that time, my Dr. just did CT scans every 6 months to keep an eye on the nodules. However, I wasn't comfortable not knowing what my actual diagnosis was so we did the Bronchoscopy, which confirmed the MAC. That's when I found<br> this website which led me to Dr. Aksamit. I went to see him about a year ago and he agreed with my Dr. that we would not start treating the MAC at this point because I'm still relatively symptom free. I will see Dr. Aksamit again in December. Thank you all<br> for posting your experiences with this disease. It's helpful. I pray that we will continue to find out more about good treatment for this disease. Rosie from Minnesota<br><br><br><br><br>
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2 ReactionsCongratulations Kathrine. Fantastic news and right before thanksgiving 🙂
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1 ReactionThanks for sharing your experience. I was admitted to the hospital for biopsy of a 9 mm lung nodule only to be sent home when the danger of puncturing the lung was greater. A scan taken in the hospital also showed that the nodule had decreased in size. So that is all good. I have not been diagnosed officially with MAC because I can't provide a sputum sample but will see my doctor next week to see which direction he feels we need to take. I would like to have a bronchoscopy and just get it over with but he can't reach the nodule and that has held us up.
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1 ReactionYour answer makes so much sense. I was really miserable this summer (humidity/ perhaps mold in duct system) and am about 80% energy now versus really low at that time. I will start by having my duct system cleaned of bacteria. The prior owner of my house paid no one to come in as I have learned and I imagine this system will be filthy. Thanks for everything and Happy Thanksgiving.
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