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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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Saw this today on the AIT Therapeutic website today on the use of nitric oxide in NTM
It started it was granted orphan drug status by the FDA
http://ait-pharm.com/press-releases/
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Hug
1 ReactionHere is a better link to nitric oxide orphan status granted by FDA
https://globenewswire.com/news-release/2017/10/03/1140090/0/en/AIT-Therapeutics-Inhaled-Nitric-Oxide-Therapy-Granted-Orphan-Drug-Designation-by-the-U-S-Food-and-Drug-Administration-for-Treating-Infections-Caused-by-Nontuberculous-Mycobacteria-.html
Shari
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1 ReactionThat is good news. I hope they try it for the MAI pts that don’t have severe symptoms yet. It would be nice to eradicate it before that point.
Jo Ann K
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2 ReactionsHi @auntnanny please keep us posted on your next sputum. Hope all is good with you,
Hi @tdrell did you get my question? It was about us all getting tested for pseud and other nasties yearly, as it seems we are more likely to get these things.
@heathert Hi Heather. Good suggestion. My doctor always had me do sputem tests every six months, and now annually. (to all) If your own doctors don't line this up for you, you MUST be pro-active and do this for yourselves. Request it and make the appointment.
@tdrell, Hello Terri! My question is: Can they develope a vaccine agaist these mycobacteriums? OR Are they any closer to coming up with a compound that will bust through their biofilm, so that antibiotics will work; plus kill them at their source? If your list isn't too long for you to post, I'd love to know what is on it. I feel like you may have come up with plenty yourself! I am sending you lots of graditude for attending this seminar. -hugs, Terri
Thanks @windwalker, I have not had this suggested by my doctor, will ask her at the next appt.
Dear windwalker,
Does your doctor do broncoscopy every year?
Nicole
@nick52, No, Nicole, I haven't had a bronchoscopy since 2005. Back then; it was done to confirm MAC diagnosis and to see if anything else was going on in my lungs. I know that some doctors like to do the procedure as part of the cure. It is one way to do a cleanse and dislodge mucous plugs.