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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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My cough had gotten some better by the time I got the nebulizer and vest. But the vest was the best thing for helping to clear my lungs as I could not get any congestion out of them until the vest. I think the two did help improve my cough though and now I do cough some daily but it is very much reduced from the continuous cough that led me to the doctor in the first place. It was almost non stop at one point.
What is your wife's diagnosis, does she have bronchiectasis, any infection, cough? Is she using meds other than the neb, and what is the prescribed med for the nebulizer?
It would be helpful for us to know, since our symptoms and treatments are so varied.
Sue
Sue and Spencersok, I have been using a nebulizer two times a day and it really helps in getting mucus out. Especially before going to sleep. No longer cough at nite. I have Bronchiectasis and MAC. Its my understanding that the treatment for MAC is difficult and can lead to other ailments. So am I correct in thinking that what I am doing is to get rid of mucus and infections from the lungs? So far my Dr. hasn't given me any medications for MAC but to clear the lungs with a saline solution. Hauoli
Hauoli, if you were a student of Sue and Spencerwok I’d bet they’d be proud as punch of you. You set the learning curve. If you’ve not already done it, you will likely find it rewarding to track down posts that emphasize the merit(s) of the High Octane 7% saline solution which is reputed to be lethal to MAC invaders seeking to colonize your lungs. Finally, tell your doc her or his treatment plan triggered some applause, but don’t reveal it was from a psychologist. We’re widely regarded as bozos. Don
Yes, if you can clear things without the meds, you will be much happier - they are no fun. Just be vigilant for any downturn in you health - more fatigue, weight loss, no appetite, night sweats - and report promptly to your doc.
Sue
Hi Heather @heathert. I do remember what a number of the serious side effects were for Arikayce that were more prevalent than when using the big 3 alone. But I'm not sure it's a good idea to repeat them here -- some people could then be too afraid to take Arikayce.
I guess it's like cancer treatment really. Some cancer chemotherapy can have dangerous side effects and risks, but it is a decision you end up making if you are trying to get rid of a bad cancer. It is the same for Arikayce.... there are some life-threatening dangers that could happen to a few people, but I have decided to take it if I can because nothing else has worked for me so far.
Anyway, the follow up study for Aricayce was only about whether it stopped the NTM or not. Unfortunately they only followed up for 3 months after finishing Arikayce treatment, They found that around 40% had their NTM "cured" for 3 months after finishing meds.
Other studies -- after any kind of treatment -- have shown that around half of all NTM cases reoccur again, usually within 12 months of apparently being "cured". So I don't think 3 months is a long enough time for a follow up study after finishing Arikayce,
Arikayce may or may not help for as many as 40% of cases if you looked at 12 months after finishing meds.
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Hug
1 ReactionHere's what Medical Researchers and Doctors really need to do for us, but they aren't doing yet:
1. First find and treat us with inhalants of the right Glycoside Hydrolase Enzymes to safely break down Mycobacterial BIOFILMS inside our lungs. (Antibiotics like the Big 3 quite often cannot do this. They often can't get through the Biofilm right into the Mycobacteria to kill it. In fact, bacteria make these Biofilms in order to shield them from attacks by antimicrobials! It's common to need 100 or 1000 times the dose of antibiotics to kill bacteria that live in Biofilms -- that's impossible. So kill the Biofilms first, please!)
2, Then, when the Biofilm is broken down, hit our lungs with antibiotics that are known to kill PLANKTONIC forms of Mycobacteria -- e,g. Azithromycin etc. (Nearly all antibiotics are only tested on -- and often only work on -- the free-floating Planktonic forms of bacteria, but not the same bacteria living in Biofilms. Most mycobacteria in our lungs live inside the Biofilms they create. So -- without the Biofilm -- we'd probably need much shorter treatment times with the big 3. And the Big 3 drugs wouldn't cause as much damage as can happen after years of taking them).
3. And then, if we seroconvert, please find and give us periodic (inhaled?) prophylactic treatments to use long-term to help prevent Mycobacteria -- and its Biofilms -- from returning inside our lungs.
That's the program, folks.
How do we get Researchers and Doctors to look into it?
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Hug
2 ReactionsAddress your suggestions to the NTM specialists at NJH?
Sue
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2 Reactions@anniepie,, sounds great, you should send this to a pharmaceuticals company , flippin biofilms need to go go go! take care Heather
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2 ReactionsThank you Sue, I will be careful to observe myself to see if I go downhill. Ill see my pulmonologist in a few months and see what's going on with me and go from there. You are so right about weight loss. I try to eat more and so far am keeping my existing weight. Basically a vegetarian.
Grateful to you, Hauoli