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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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Thanks @ anniepie, Hi @jr2366 Jennifer , I found the aricayce much easier than the big 3, the aricayce inhaled hardly had any side effects for me, only loss of voice which you can take strepfen for. Please let us know how you get on. Take care Heather
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1 ReactionMe too Heather -- I wish that also.
Most drugs fighting all kinds of bacteria are petri-dish-tested using mainly the planktonic ('free- floating') stage of bacteria, not really testing much sessile bacteria living inside biofilms. The drug companies do that to show their drugs work. (They would need drug doses far far higher to fight through biofilm to get to the bacteria, and nobody can survive that).
Some NTM drugs do manage to get into the outer layers of the biofilm though -- just not into the inner bacteria in biofilm. (Azithromycin is one that can do this a bit -- at least for a while). So it's no wonder the drugs can take such a long time trying to kill this bug.
Unfortunately our lungs a rather delicate things -- we can't treat them like "old leather bags" as many people do when we're young! While our stomachs can handle vinegar and things like that, our lungs cannot. (Neat vinegar kills mycobacteria, folks!). But even inhaling vinegar gas into our lungs can cause severe damage to our lungs, unfortunately. The lungs are a difficult place to treat bugs.
And it's very difficult to find things that break up biofilms in the lungs that are also safe to use in the lungs.
Some people, with cystc fibrosis for example, have tried nebulising drops of essential oits that are meant to be antimicrobial and fight biofilm. But then they can develop severe hypersensitivity reactions to them in their lungs, and can't use them again. Some other people have started using sound vibrations on their chests (some sound vibrations are used to help prevent biofilms from developing on surgical equipment). But it's difficult and I wish there was much, much more research on mycobacteria treatments and biocides for biofilms that are safe to use in the lungs. We all do.
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6 ReactionsHi Ellen, @ellenn, also in additon to what @poodledoc has advised you, on Page 1 about the middle of the page on the right-hand side you will see a small box where you can select either 'Oldest to Newest' or 'Newest to Oldest'. 'Oldest to Newest' is the default so you always start on Page 1. Select 'Newest to Oldest' to go to the most recent posts.
Good luck
Hi Heather @heathert -- sorry I missed this earlier post.
I'm in Brisbane in Queensland, Australia -- the sub-tropics.
Yes we are very close!
Covid19 is up and down here -- mostly it's now kept very low in about three-quarters of the states, including Queensland. But we are very strict on Covid in Queensland -- a lot like New Zealand really.
Victoria, a southern state, had a bad 2nd Wave for about 4 months last year but eventually succeeded in eliminating Covid in the community because they had hard lockdowns, lots of PCR testing (free of charge!), compulsory mask-wearing, state border closures, strict quarantines for 14 days for all arrivals and very strict enforcement of adherence for all these things.
Only New South Wales (NSW) has had a more 'relaxed, risk-taking' attitude than other states by comparison. It's run by a different political party that tends to value the economy more than older people. They are very good at mass testing, tracing and controlling Covid when it comes up -- SO FAR -- but they leave most things open and if you're older with health problems and catch Covid, that's just regarded as your bad luck.
But in other Australian states that have been much tougher with Covid controls, really our economy has often bounced back quicker than the NSW economy! New Zealand has found that too. Of course, there's no place in the world the economy hasn't been damaged at all.
But we all wish this pandemic would go away fast and we're really saddened for the UK, Europe and USA and other countries having a terrible time with Covid.
You take care also, please x
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2 Reactions@anniepie thank you for that information, there are a few drugs in the pipeline for gram negative bugs, so hopefully some of these will be successful at getting through the biofilms. So difficult!
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1 ReactionHi @anniepie No worries. We used to come over to Surfers Paradise and Noosa quite often for holidays, so nice and warm, with great shopping, looking forward to coming over again.
Great that Queensland has kept COVID under control, New South Wales sounds like they need some tougher measures. We are so lucky with the way COVID was treated in our areas, hopefully the vaccine will be safe and last a long time.
Yes USA and UK etc have had a terrible time, they have different ideas to us, so sad.
I tried to private message you but it diddnt seem to work.
Take Care
Heather 🙂
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2 ReactionsRvan, there are many friends within this forum that have clinical knowledge, personal experience, and amazing minds. I too am a newbie, an apprentice here; I too was diagnosed back with late onset “adult Asthma” ( I am sure a created label) in 2018 although never found in my family tree nor with the typical characteristics. I was diagnosed with MAC after the Bronchoscopy Oct 3, 2020 when AFB lit up immediately. My very cherished Pulmonary Dr (who assured me has much experience treating MAC) calmly and lovingly explained that “presently the course of treatment” is mapped by the patients condition, symptoms, overall health with any and all comorbidity. Even “weight” was a factor...low BMI means more chance of progression. So the facts cards were lay down on my mental table, deck stacked, and the decision was mine. I could “draw” and “stay in the game”....start a treatment that has NO guarantee...but is the course offered (the game), or fold (as many do and have...which my doctor loudly pointed out to me...BUT...there is always a but) and do nothing right now. As you can see, I am a real card player...Canasta as a child Bridge as a mature Woman...so...I checked my hand and reviewed the table...here now comes the BUT...
“What is my life...the minutes and hours of participating on this planet...with the persons I love and care about...with what I can accomplish, offer, and leave behind...worth to me? Or “NEED to be for me”? My personal answer...and everyone on this forum will have there very own version of this answer....BUT my answer is I must have the quality of time existing...that allows me to have that time to love and be present. So, rvan, the BUT for each of us will be different...you will need to ask yourself “what are YOU willing to do about your situation?”
The doctors will offer the best they have today...these lovely friends of the forum can share their thoughts...but only you can determine the best treatment for you. Mine was a very quick decision; the drugs are an arduous path to long chemical therapy, with no guarantee...my pains, weight, fatigue, lack of air, all are unacceptable conditions for me to exist in companionship with my world, so I chose the drug therapy and am grateful that I could make the choice. I am on my second month of the cocktail of 3, have my energy back, can breathe, pain diminished, my family and friends quit whispering about me behind my back (pure love and fear), cannot produce any sputum (a variant of MAC/Lady Windermere Syndrome) so must hold my hand close to my heart and draw and discard each and every day. I draw...on my gratitude...and I discard my fear.
I wish you the best of luck and wisdom in making your decision.
Be well,
Regina
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8 ReactionsThanks CMI, this is what i am sure lies ahead for me.. i am guessing you chose to take the meds and fight this thing, right now i do have a very low BMI 🙁 the journey scares me but I need to take it head on. I have heard many say that you are more likely to die with MAC then to die from MAC which is very encouraging. This forum in such a short time has provided much support and knowledge I could not have gained alone. Thanks for you insight and lets kick this thing in the ass 🙂
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3 ReactionsRegina, What a beautiful way to explain this very difficult decision.
I, too, chose to treat about 2 1/2 years ago, for many of the same reasons, and am glad I did. My treatment was terminated before I was "negative" so I know the MAC still lurks, and I keep it at bay with 7% saline, airway clearance, a healthy diet and exercise. I need to hang in for my kids and young grandkids - happily after treatment I am healthy enough to play outdoors with my little boys (our safety plan for Covid.)
@rvan There are many here who will hold your hand on this journey - lean on us!
Sue
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2 Reactions@cmi You are a smart and wise woman! ( and an asset to this site) irene5
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