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:
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!
KateMN
@boomerexpert, I am so glad that we have your experience to help us fight for recognition, finding better treatment, and more research.
@nick52 , Thanks Nicole. Can always use good vibes. I sent my husband along to Ca. without me for the second week of our vacation. I opted to stay in Tucson with my many girlfriends (I used to live here) sending him up the road without me; cut my stress level way down LOL! He doesn’t do well with these kinds of situations. I guess because he hates seeing me in such pain and he cannot fix it. I hope to make it down to Fl. to see you before you go home.
@windwalker It’s a relieve to hear that you are on amends. Sending you positive thought and hugs.
Liked by heathert
@windwalker thanks T…we all have the experience and grit to fight for better treatments and public awareness of this quickly growing infectious disease…one doc at a time…one letter at a time…one new person educated on it at a time.
Liked by heathert, tdrell, Kanaaz Pereira, Connect Moderator
@windwalker i am looking forward to see you! I have a nice spare room for you two. How are you feeling now? Hope the pain has diminish a bit at least! Does your jaw hurt or just your teeth? I was mess up big time with my first jaw surgery. I had to have
a second surgery of 10 hours to correct the butchery done to my jaw in Portland Maine. So be careful girl! Do not let anyone convince you of a surgery unless you are absolutely sure you are in the right hand. This was not very well known in 1985 today good
oral surgeon has the best of the technology. Relax and use heat if it helps! Gros bisou!
Liked by Terri Martin., Volunteer Mentor
@windwalker ….absolutely get flare-ups….so may not be using the muscle relaxant prior to sleep but will….vary dose between half or whole. It was diagnosed in the Dental section of the medical school. I was referred to a private dentist for RX. The treatment was bite splint and muscle relaxants. He used a nurse anesthtist.sp? who was supposed to hypnotize me. Well the visiting dentist in the corner who was earning CEUs ended up hypnotized but not I. I think the Nurse wanted to shoot me…but I was not able to give up control in a cold room, with itching skin and an impatient person.tdrell
@windwalker
@boomerexpert , what an incredible advocate you are! Thank you!
Liked by heathert