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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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Hello Katmn:
I am a retired physician with a specialty in Internal medicine and an interest in infectious diseases, particularly the mycobacteria. My peer-reviewed articles appear on Medline and include an article related o MAC for The Journal of Infectious Diseases. My interest in appearing on this forum is not to validate anything, nor promote my particular papers. It is simply to add information when and if asked. Thank you.
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3 ReactionsProviding that one is dealing with MAC infection alone. (Mixed infections with MAC and TB do exist) –
the use of Rifampin, ethambutol and azithromycin and sometimes occasional amikacin by nasal insufflation (depending upon your doctor’s judgement) seem to be the best alternatives.
However the gastric mucosa must be taken into consideration in such long-term use of oral antibiotics and other supplements. And often this cannot be solved by merely taking medications after meals.
Agents to prevent irritation/erosion/ulceration of the gastric or duodenal mucosa from such long term use of medications, all of which land in the stomach include ranitidine, Nexium, and sucralfate.
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1 Reaction@katemn Katherine, when I was first diagnosed after the big scare of a bloody overnight stay in the ER, I did ask "why me?" and was envious of everybody who did not have this illness. But I quickly stopped feeling sorry for myself. Like you said, we need to focus on what we have and appreciate how blessed we are. There are so many people in this world who are much worse off than us. As long as we understand this, we should be OK.
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2 Reactions@internalmeddoc, I think you are on the wrong Forum .. perhaps you need to be on a professional medical Forum? This Mayo Clinic Connect is geared toward PATIENTS dealing with our OWN MAC/MAI journey .. sharing our own PERSONAL experiences .. supporting each other with our OWN personal issues and questions. NOT dueling each other with medical opinions. AGAIN, you have NOT stated JUST WHERE you do your medical research .. NOR do your medical work to validate you stated medical opinions. Best regards. Katherine, Volunteer Moderator
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1 Reaction@internalmeddoc, would you mind linking us to your peer-reviewed articles for MAC for The Journal of Infectious Diseases? That would certainly validate your research. Katherine
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2 Reactions@internalmeddoc, you must indeed be proud! Would you mind sharing the name of your teaching hospital .. we would certainly recognize it .. " my tenure as an attending at major teaching hospitals for 15 years"? Katherine
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1 Reaction@unicorn I was diagnosed in September 2014 after coughing up a very large amount of blood and an overnight stay at the ER. After that no more blood for over a year until earlier this year when I had a cold and laryngitis. But the blood was much, much less the second time. I only reported to my pulmonary specialist afterwards and did not go to the hospital or the ER. It was very scary the first time it happened because of the amount of blood and also because I was worried it was either TB or lung cancer. Now that I know what I have, I was able to deal with the second time much more calmly. Like you said, there is nothing they can do anyway. Knowing what I'm dealing with takes away the fear factor.
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4 ReactionsInternalmeddoc.....when I retired 11 years ago from a 40 year career as an RN.... I began to volunteer in the Red Cross Health service division. I bet you would find a niche within the organization....whether helping out in Shelters.....locally, nationally or perhaps internationally. In addition or instead, you could provide assistance to folks right after they have to flee from fires in their homes while being part of your area's Disaction Action team. The list of volunteer opportunities in Red Cross is endless!!! Tdrell
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2 ReactionsWindwalker....I did some checking re water heater temp comments by finding DR Joseph Falkingham's lecture from NJH NTM 2016 conference
Here is the link....the title his speech was "surrounded by mycobacterium"
https://www.nationaljewish.org/ntmvideos2016
Tdrell
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1 ReactionHi, I was just wondering what you thought the reason I would get hemoptysis about 5 months after stopping the pills? It's happened twice now, same time frame. The pills (thebig 3) wipe me out, I stop taking, 5 months later, blood, I get scared and take the pills again, but the time I can tolerate them is getting shorter. It has been about 5 years now, I initially took pills for year and a half, but not possible now. Is is MAC? is it Bronchiectasis? both? I know no one knows for sure, just want your knowledge. Thanks! Christa