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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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Welcome... Our stories are almost identical except my first doctor insisted I take the BIG 3! They truly nearly killed me! I tried twice !
List 40 pounds! Changed doctors!
Truly stated every thing you listed . No meds! 3 years later doing ok! GERD getting under control!
Keep on keeping on!
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1 Reaction@vestafit! I am also learning so much and enjoying every step. I am really happy to hear your story how you got your saline. This is great news!!!
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1 Reactionmy husband had a bad case of pneumonia in 2013 while in federal custody,they almost ley him die. he had so much fluid in his right lung he had to stay sitting up,Finally he was take to hospital where they inserted tubes to drain the fluid. He came home 2014 after 6 months he begin slowly to get sick . he receives medical care thru the VA ,his primary care doctor would treat each symptom with a pill, he went from 200lbs too 136 when his lung Dr. ordered a sputum test it was then he said he has MAI.we started the 3 antibiotics they said he would take for up to 18 months, its been 4 years he still takes them, every 2 or 3 months his torso will get so hot you can barely touch him, his lung Dr. sends him levoquin to take for 3 weeks. I am searching for answers on how too save him, his lung Dr. said he can never stop taking these antibiotics or the MAI will just explode says all we are doing is holding it at bay.
he spends more time in the bed than anything else.
I just happen on this site and hoping for some enlightment and guidance.
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1 Reaction@vestafit You go girl! YOU are your best advocate. I haven't seen you on here before, so I want to welcome you to our community. Ave you had a chance to try out the saline?
@america —Yes it’s a very interesting condition so there’s so much to learn. What I like about it is there are plenty of things we can do to help ourselves. Personally, I prefer not to rely exclusively on antibiotics.I thought I would not use the saline until later (a future tool in my MAI tool belt) but after a NTM support group meeting I decided to just go ahead and use it now while I’m feeling well. The clearer we can keep our airways the less likely that the disease will progress.What about you? How are you doing? Where do you live and do you feel you have access to good care?
It is shocking to me that in New York City, at a major hospital, seeing the head of the pulmonary department just wasn’t enough. My doctor did not prescribe pulmonary function tests, regular sputum cultures,saline nebulizing, or discuss how to handle a flareup. I am switching to one of the top doctors in NYC in September. I’m paying out of pocket to establish myself with her until I can switch insurances in January. I think it’s worth it though. It’s a really bad feeling when you don’t have confidence in your doctor. But, as we are saying, we have to advocate for ourselves!! Going to the monthly NTM meetings is extremely helpful. In fact, I would not have been able to see this new doctor without being part of this group. She is not excepting new patients unless you are a member of the NTM support group.
Thank you for welcoming me! Yes I am using the saline nebulizer and find it makes a difference.I was using the nebulizer attached to the aerobika but recently pulled them apart and I am now trying them separately. I think it works better for me. I hope you are doing well.
@barbara1948, Hi Barbara; nice hearing from you. I have GERD and have had trouble swallowing also. I had an endoscopy where they discovered I had a narrowing of the esophagus. They widened it with a small balloon type thing and said I would need it done every few years. That was three years ago, and I can tell that I need it done again. It feels really good afterwards to swallow so much better. They put you in a twilight anesthesia for the procedure. We have a GERD topic listed on the Discussion Board. Let me know if you have trouble finding it.
Inhaled Amikacin.
@vestafit Wow! That is impressive that NTM has that kind of pull, and that they have your back. I went to one of their Annual conferences in D.C. two years ago and learned so much. I am thrilled to learn that you are seeking the best medical help you can find. I went years seeing 'the best pulmonologists' in major cities, not a one ever did a sputem test to see what was giving me pneumonia repeatedly. I have a feeling it was mac and not pneumonia. I have a good sized chunk of dead lung tissue as a result. My spirometric breathing tests show I have 37% lung function; I do very well breathing despite that. Aside from extreme fatigue taking me down from time to time ; I live a normal life. Your NTM support group sounds intriguing, can you tell me what your meetings are like?