(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
That is awesome for you. I am so happy for you! I hope that continues!
My family would gladly send me there if there weren’t such unrest in that part of the world!
Those numbers are listed ! They are not accurate, however, because it is not a “reported” documented disease by the CDC. Just since I joined this group the numbers have gone up.
I agree with everything you say. I have been to many ID doctors ( because we moved) and have found that most wish there were a less toxic treatment, and feel that for many patients they treated only a few made it through the treatment which is frustrating for them as well. However, the consensus for me since mine was progressing and I was losing so much weight was that treatment was the only option, and the sooner the better. They were not at all adverse to my taking vitamins like D and C and calcium etc They encouraged that. They also want me taking/using other things at this point to which I told them I am not a party animal - boring really I guess. And yes we know our bodies best. I am just hoping for a less toxic cure (sooner than later) so I can switch to that. We need to weigh our options and make informed decisions based on everything. My family wants me to “live” so I am doing the treatment for them.
I stayed on the meds as long as I could, but my body could not handle them. I was very active and this illness has stopped me.
Ling123...Please private message me.
From what I am reading there is a plan for a phase II trial in the US We need to right the FDA to approve the protocol to start the study
What form of Nitric Oxide are you getting?
Yes!
They better have several trials since there are so many of us ready to enroll!!!
I have just started my MAC journey and the pulmonologist I saw yesterday recommended a chest wall oscillation therapy vest to clear the mucous from my lungs, twice a day for ten minutes. Sure beats all those horrible anti-biotic treatments - if it works! He said that Medicare would pay for it. Not sure whether they would buy it for us (those on Medicare) or pay for the rental. It is quite expensive. Since I am a new member, I was not able to put in the link, but, if you're interested, google for chest wall oscillation therapy vest.