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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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Anyone know how I can get one email a day, with the posts of that day? Can't handle the bombardment of so many...I'm trying to cut back on emails...
HI TERRI, CHECK THIS OUT, LOTS OF TRIALS, BUT NONE WITH NITRIC OXIDE
CDER DRUG INFO
9:58 AM (7 hours ago)
to me
Dear Christa,
Thank you for writing the Division of Drug Information in the FDA's Center for Drug Evaluation and Research.
You may find information regarding mycobacterium clinical trials being conducted in the United States in the U.S. National Library of Medicine (NLM) clinical trials website at: https://clinicaltrials.gov/. If you search Mycobacterium under Condition or Disease and select United States under Country, information will populate for those clinical trials.
In general, drug companies seeking to sell a drug in the United States must first test it. The company then sends FDA the evidence from these tests to prove the drug is safe and effective for its intended use (i.e a specific use). FDA then reviews the company's data and proposed labeling. For this information and more on the FDA approval process, please review the following FDA page: http://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/default.htm.
Best regards,
EV
Drug Information Specialist
Division of Drug Information | Center for Drug Evaluation and Research
Food and Drug Administration
For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter @FDA_Drug_Info
This communication is consistent with 21 CFR 10.85(k) and constitutes an informal communication that represents our best j
I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don't expand properly.
I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.
I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.
Anyway, I appreciate knowing there are others in my shoes to talk to.
pkayh
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1 ReactionJust so you know I too have the same back issue as you and am on the big 3 as well. (You only mentioned two). I pray you do well!
@pakyh , wow! You made it good you are now eighthy! Keep up the good work ! I appreciate you for sharing with us! I too have Bronchiectasis and had MAC found with my broncoscopy in 2012 but never taken antibiotic. I had a lot of mucus in my throat and find
out it was due to aspiration. Now that I thicken my liquid I don’t have that anymore. I’ve being taking probiotic and in october my bronchoscopy lab test reveal no MAC.
I have check that Nitric Oxide and there is a combination on the market at the Nature’s food patch with L Arginine and citrullaline (?) that contain citric Oxide. It is good for heart function and blood circulation. Interesting article to read. Thanks for
sharing!
@jkiemen
5 billion cells is a very low dose. You may want to check its efficiency with your condition!
@marier in Canada many doctors recommend probiotic when you take antibiotics but you must take the probiotic 4hours before or after the antibiotic. Antibiotic destroys the good and bad bacteria so that is why they recommend probiotics when they prescribe antibiotic to give good soldiers to kill the bad one. If you have more bad soldiers than good one they loose the fight and this is when yeast infection come in the picture. I am giving you my doctor explanation if that could help. To cure a yeast infection you must take a very high dose of probiotic in the 25 billion and 50 billions of good bacteria. If your doctor has knowledge with probiotic he will explain that to you.
@marier i thing you are saying MAC won’t go away if we don’t take antibiotics. Well MAC isn’t there anymore for me and took no antibiotics.
Thank you so much theyvdidnt tell me that and so now im done with the antibitic and i have the yeast so im still struggling