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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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Thanks, Katherine - this is an article we must all share with our docs...all docs not just ID or Pulmo...for ex: I urged my Rheumy to start requiring a CAT scan in addition to the standard TB test before placing patients on biologics - shockingly, he looked surprised even after admitting that he now has more MAC patients than he's ever had before...sigh...
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2 ReactionsHi, Everyone, This notification just came across my email. I thought you all might have an interest:
Live Broadcast 6:00a.m. ET
Rebroadcast 4:00 p.m. ET
Nontuberculous mycobacterial (NTM) lung disease will be a featured topic of discussion on Sirius XM's Doctor Radio (Channel 110) TOMORROW, Tuesday, April 18th. The broadcast starts at 6:00 a.m. Eastern, featuring guest experts Dr. Leah Lande of Lankenau Medical Center, and Dr. Joe Falkinham of Virginia Tech.
If you are a SiriusXM subscriber, you can tune in to Tuesday morning's broadcast on Channel 110. Those without a subscription can sign up for a free trial to listen online at http://www.siriusxm.com. The show rebroadcasts the same day at 4:00 p.m. Eastern.
You can email your questions to the show at docs@siriusxm.com (please note in the email that it is for Dr. Adams/Drs. Lande & Falkinham). You can also call in during the show at 1-877-NYU-DOCS (1-877-698-3627).
Doctor Radio is hosted by Dr. Francis Adams, a well known New York pulmonologist who has taken an interest in NTM lung disease, featuring it on his program many times.
Linda
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1 Reaction@lindam272, thank you for letting everyone know. I will try to listen tomorrow. I don't currently have a subscription to sirius xm so Tonight ill see about registration for the free trial and have it set up for 5 a.m. central time. Have a good night.
Becky
How is treatment different at NJ compared to Mayo Clinic? Waiting for sputum results, haven't been diagnosed with MAC yet but my Cat Scan wasn't good. No cough just so tired and terrified. Told at NJ that they wouldn't give me the drugs.
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1 Reaction<br><br><br><br><br>They cannot give you the drugs until you get test results back. Those <br>cultures need several weeks to grow, and then they need to do a culture study to <br>determine which drugs will work. Please keep us posted on your test results. We <br>have all been in your shoes of feeling terrified. You will be ok. Jump each <br>hurdle as it comes. We are here for you. - Terri M.<br> <br><br>
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1 Reaction<br><br><br><br><br>Also want to add that I have been living with MAC for 11 yrs. I feel the <br>best I have in all of these yrs thanks to treatment from the Mayo Clinic. <br> <br><br>
Hi everyone! I am writing this last minute because I am getting slightly nervous....I am supposed to have an endoscopy tomorrow to see if I have acid reflux. My primary doctor referred me for this because I told him that a lot of ladies have acid reflux that have MAC/MAI, and I have to clear my throat more than I used to. I DID NOT tell my pulmonologist, or ask his approval...(don't know if I should have). Should I be worried about doing this procedure while I am on the MAI Big Three drugs? And, worry about a possible infection? I live in Great Falls, Montana currently and they only have the procedure where they "put you out" and stick the tube down. I would love your advice, I can always cancel last minute even though I know they would not prefer that. Yes, I am feeling a little "irresponsible" right now. :/
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1 ReactionWhen I was first diagnosed with MAC, one of the next things the infectious disease doctors had me do was to have an endoscopy because I have GERD and they wanted to rule out some additional things. So I would say it is a good thing to have that done. That is my "opinion." I was not on the big three until after that testing but doubt that would be a problem. However, with that said it is also my "opinion" that there needs to be communication among your health care providers. Hope this is helpful. Irene
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2 ReactionsBeatitnow....i have had a number of EGDs over the years for my GERD....uses conscious sedation so you will have no memory....maybe a slight sore throat ....they will give a sheet with info after....i was not on the Antibiotic trio but as long as you inform staff that you are on them..you should be ok.your pulmonologist should not be upset....his or her domain =lungs not GI tract..... Another test might be an esophagram which sees if food eaten goes to stomach properly....example for me....my esophagus takes it time getting food into stomach...terrid
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2 Reactions@beatitnow, I am unfamiliar with your MAC?MAI and your medications. I want to say they I have had many endoscopies. Actually at three different facilities. I was also put out. Afterwards, I felt some abdominal discomfort and took Tylenol for it. Only once was I nauseous the next day.
I hope this helps.
Hug and prayers are attached to this reply.
Rosemary
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