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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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Has anyone here got candia from the antibitics im free of mac and now have candia
cool. love it
OK...here's what I wrote:
Almost 1M Americans have MAC or some other NTM…a number that is growing rapidly (in fact, some of your staff most likely have the infection and don’t know it…for most, dx comes when the infection is far along). Since it is transmitted through water and soil, and is no longer limited to those who are immunocompromised as it once was, it is quickly becoming a public health threat. If there were a reporting requirement for NTM’s as exists for TB, I feel confident the numbers would be perhaps double those cases currently known.
The US is grossly underprepared for such a wide-spreading, as the current treatments (large amounts of antibiotics taken by mouth) are both 20 years old, and increasingly less effective – not to mention their toxicity and extreme side effects. Clinical trials for new, inhaled (thus direct), and more effective treatments are found as far away as Israel, yet little is being done here.
Please don’t wait until it gets to epidemic proportions to encourage research on and approve better treatments. Pharmaceutical companies will find plenty of customers, and you will have gotten ahead of this rather than simply reacting once it’s too late.
Thank you.
Terri Benincasa
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3 Reactionsgreat great letter!!! So smart
Excellent!
@marier What's candia. I can't seem to find a reference from Google.
@boomerexpert Thanks for sharing the email with us, Terri. I was just wondering how I could get mine started. This will help me get my thoughts together.
Candida thats the spelling
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1 ReactionI had to use clarithromycin and clofazime those were the antibitics i used to treat the mac
@marier Yikes. That's yeast infection. Tricky infection to get rid of. That was one of the reasons I didn't want to get the long-term treatment with antibiotics. The drugs may clear up one infection but in all likelihood will start another one. Eventually our bodies may become resistant to the antibiotics. I'm so, so sorry that you have to go through this. Hard enough to deal with one problem. I'm keeping my fingers crossed that probiotics will work for you to get healthy again.