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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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<br><br><br><br><br>I cleared my throat for 45 yrs.due to a combination of post nasal drip and <br>gluten allergies. Every time I'd eat bread, cake, or anything with flour, mucus <br>would instantly pool in my lungs; followed by hard coughing. I have been mostly <br>gluten free for years and am now on tobramycin which dried up everything , even <br>the post nasal drip. And I don't cough anymore!<br> <br><br>
@beatitnow Amy, I had/have silent reflux and never had heartburn. I'm on 20mg of Pantoprazole but have been on it for three months now and I also just finished the 12 months of meds. My reflux is much better. I still have some throat clearing( and it was really bad about six months ago when I was halfway through the Mac meds) but it's not as bad as it was. I bought the wedge pillow... am trying to watch what I eat and not eat too late. I'm also going to try to switch over to Zantac so I can get off the PPI since I'm doing better. The hardest thing for me has been trying to figure out which foods cause the reflux. I think tomato sauce is a trigger for me. And I try not to eat anything fried anymore. Hope that helps. Nan
@becky33, Im glad you watched the videos. They are so worth the time. I am watching them again and taking notes this time. How did your doctor's appointment go last week? Im also wondering about all the rain and flooding. If you are on the missippi river, are you still able to stay in your home or do you have to leave? I hope everythings ok!
Take care ,
Becky
<br><br><br><br><br>Hello, I searched the National Jewish Health web site and could not find <br>the videos that pertain to our conditions. <br> <br><br>
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1 ReactionConcerning the videos at NJH... could someone provide us a link to see them, or tell us how to find them? ... the ones that are about MAC and bronchiectasis.... would be most helpful. Thank you! Pamela
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1 Reaction@windwalker, sorry i could give you a promt response on the NTM videos. If you havent found them yet try for the 2016 videos http://www.nationaljewish.org/ntmvideos2016. And for the 2015 videos i searched on http://www.youtube.com , then i typed in the search bar NTM video 2015 at national jewish health. Each topic is about 40 minutes. Dr charles daley starts with a ten minute welcome, then dr michael iseman does historical perspective, then dr richard wallace the microbiology of ntm, then dr gwen huitt to treat or not to treat, dr jakko van ingen beyond skinny ladies, then a morning panel discussion, the afternoon ntm lecture series dr rachael thomson ntm everywhere, then dr ken oliver treatment of ntm, then dr john Mitchell when antibiotics are not enough , then beth McKnight a patient's perspective, then an afternoon panel discussion. Youtube does not have them in order so i listed them in the order i remembered seeing them. i hope you can find them, let me know either way. Stay strong and Have a wonderful day!
Becky
@becky33, How was you doctor's appointment and are you affected by the flood water and do you need a place to stay? Please Let me know if i can help.
Becky
@pamalasc1, i just posted to windwalker who requested the same information and i think it post to where everyone can see it. If not let me know and i will try to repost the information. Have a good day.
Becky
<br><br><br><br><br>Thanks Pam!<br> <br><br>
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1 Reaction<br><br><br><br><br>Thank you Becky!<br> <br><br>
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