Connect
(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 ..
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Here's the link to the discussion about prevention:
- How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/
-
Like -
Helpful -
Hug
1 Reaction@colleenyoung Thank you Colleen! I copied it and saved it to my notepad.
Thank you very much Teri. Our primary physician is going to refer us to an infectious disease doctor.
@ginak! Thanks for your response. My husband have aFib and git the same treatment as you had except he didn’t get ablation. Can you explain the procedure for ablation. I think I know what it is but not sure. Maybe you may want to try something to control
the mucus. I know it is had to stay away from food you crave for lol ! Bronchiectasis can be cause by excess of mucus getting to your lungs according to my doctor for Infection of MAC . That is why we need to have a diet with little mucus forming food. Bronchiectasis
is the reason why we catch organism like the MAC. We are more prone to catch organism from soil, water, dust etc. Being a smoker doesn’t help for sure.
Thanks for explaining Aerobika . I know what it is . We use that I think in hospital after a surgery to help the lung to work at its full capacity. Live happily Gina!
@suzie2017 Very good. I hope the I.D. doctor can devise a good plan. Will you please keep us posted?
He has never really had back problems. However, in the past few months he has had some discomfort in the lower back and in the middle. He also has a small amount of fluid in the lungs which could cause the pain.
@suzie2017 yes if he has fluid on his lung it could cause pain in his back. The fluid on his lung can make him very tired also. Has he tried Clear lung the blue battle to clear his lung.does the Dr know what causes fluid on his lungs. Clear lung is a mix
if herbs to help clear the congested lungs. What about his digestion and does he have a lot of mucus (clearing throat)? Have a lovely day! The sun is shining here. Life is crazy good!
Usually most people get general anesthesia for Atrial fibrillation ablation. Some lung conditions can increase Atrial Fibrillation. You should find out from an echocardiogram how big the left atrium in size. That would let the MD know how likely the procedure is to be successful. Making sure you don't have sleep apnea is a good idea to make sure that isn't making atrial fibrillation worse. Not everyone is a candidate for atrial fibrillation ablation.
-
Like -
Helpful -
Hug
1 ReactionYes against women. Since most people that have it are women. I think if more men would have it, they might work harder at finding treatment. Somehow I feel like we aren't getting a fair amount of attention. I keep saying when someone famous get it, then attention will be paid to it.
-
Like -
Helpful -
Hug
1 ReactionMy husband takes Musinex to loosen the phlem and he uses an aierbecca twice a day plus his nebulizer. We have never been told why he has fluid in his lungs. I am guessing it is because of congested heart failure or complications of COPD. I have asked what causes it but I was never given a good answer.