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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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I have gotten lazy on the clearance but will start back. Thank you for your help.
I am so sorry that you have MAC. I have not been diagnosed with MAC. When very early in my life I was diagnosed with Bronchiectasis, I was told that I had 2 forms of fungi growing in my lungs, coxiomytosis and histoplasmosis (probably spelled incorrectly). It was suspected that I had TB, but instead they found bronchiectasis.
Thank you for responding. I had TB as a kid, but was strong enough to fight it off however if left a scar on my lung. The Dr. said that's why I got MAC. I'm still trying to decide if I want to go on the Big 3 Meds. Going to discuss it with my family Dr. on Monday.
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1 ReactionI just got diagnosed with MAC. I, too, am 75. I’m waiting for my second sputum culture result to come back before I start on the antibiotic protocol. I have already had an EKG for a heart baseline; my eye doctor scheduled tests for a vision baseline.
Reading all the possible side effects of the medicines makes me wonder if it’s all worth it in the long run.
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2 ReactionsI know, that's how I feel. I will know more tomorrow after I see my Primary Dr. who I love and trust totally to give me the right advice. I will share with you what he says .
@isabellad & @bbeers The decision on whether to take the antibiotics is a very difficult one. Especially if we don't "feel really sick" - just coughing, or tired. Even harder to decide as we get a little older, and our bodies are more sensitive to medications.
But remember, "treatment" isn't only about the drugs. There is a lot you can do to help your body fight the infection without them - daily airway clearance, 7% saline nebs, good diet and exercise.
Here is a great video from NJH about how the experts make the decision to treat now or to wait and watch. They are talking specifically about hard to treat cases, but their explanation is very good. It's a little long, with a lot of numbers, but the bottom line is that there are choices.
Watching it and making a few notes might give you a great starting point for talking with your doctors. Don't be surprised if you get shrugs from your primary docs - this infection is uncommon enough that even a lot of pulmonologists only see a few cases in the course of their careers. That is why specialty centers like Mayo, NJH, and a few others are so important to our understanding.
Good luck with your decisions, whatever they may be. The group is always here to answer questions and give encouragement.
Sue
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6 ReactionsYes I very much empathize with not knowing whether or not to begin treatment with the big three antibiotics. I was diagnosed with MAC several years ago and have annual CT scans. This year I had a bronchoscopy which verified my increased number of nodules are MAC. My symptoms of fatigue and chest pain and loss of appetite also have increased. But I am 73 ….and enjoy life with a reasonable number of hours each day free from symptoms. It is a real leap of faith to take such often poorly tolerated meds. ( that will hopefully provide long term gain) I wish you clarity and the best of reasonably good health whatever you decide.
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1 ReactionThank you for your encouraging words. It helps when you are talking to someone who knows exactly what you're talking about.
Dear Sue,
I am so grateful to have found this site. I so appreciate all the encouraging remarks from members of this group. I have always been relatively healthy; and have never had any symptoms of Bronchiectasis in the past. So this MAC diagnosis came as a surprise. I exercise regularly and eat a balanced diet.
Doctor has me on 3% saline. Should I request 7%? I have read that it can be irritating to the lungs.
If you want to avoid/delay antibiotic therapy the 7% is worth a try - it actually suppresses the growth of MAC. This group was very different when I joined 5 years ago, reinfection seemed much more common, and there was less stress on airway clearance and saline as an alternative.
Some clinicians now call airway clearance the first line of defense for those who are not severely ill with MAC, and who do not have cavities in their lungs. They take a wait and watch approach to see if that is enough to keep the infection level low enough to avois antibiotics.
It will be interesting to see what your docs have to say.
Sue
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