(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!
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 ..
– 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.
@extratiredalway …It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.
My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?
Thanks for the information! I will try that.
Thank you for your sound advice. I will surely follow it since you have already traveled down this path.
@Spencersoc. I have been on daily Amikacin since Nov 12. Also on the big 3 and Xopenex, Saline, and vest vibration twice daily. Amikacin is a lot of maintenance and has side effects most notably a sore throat and temporary loss of voice. Since this is a new drug most doctors are getting more information from me through this blog and through my experience than they are able to provide themselves.
@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are feeling, I am so tired too and put on the big 3 just recently – good luck to all of us
Yes good luck to us all. I am so pleased that I stumbled across this site. I felt so alone dealing with my issues. Knowing that there are others going through the same problems makes me feel less doomed.
Does anyone suffer from severe depression with sarcoidosis. Jane Brown
My husband does and is on two antidepressants.
Does anyone think reflux could cause sore throat?