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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

heathert | @heathert | Nov 28, 2018
In reply to @anniepie "@windwalker Thanks again Terri - it's a precious gift for us newcomers to be helped by..." + (show)
@anniepie

@windwalker Thanks again Terri – it's a precious gift for us newcomers to be helped by someone who has been through it and succeeded. I'm actually in Australia (hi @heathert in NZ). There's not much experience in Australia but I'm at one of only 2 NTM clinics in the country. Here they want to use the standard Big 3 drugs in the ATS protocol with all the toxic risks and sometimes not very good success rates really.

Mayo is respected internationally, Terri. Thanks so much for info about your Mayo doctor. I'd really like to find out if he has treated many MAC/MAI patients successfully with the protocol you mentioned: Antibiotic 1 for 10 days in month 1 and antibiotic 2 for 10 days in month 2, alternating. (If so, I hope he publishes it, I'd like to show my pulmologists here so I can try it). Thanks for explaining you'd been really ill too but succeeded at the 12 month mark. If it's okay, I might write to him at Mayo to find out more about it. I'm very interested.

You asked for my clinical details: I was diagnosed recently with M. Intracellulare MAI by CT scan and 2 positive sputum tests. I have bronchiectasis and recurring MAC/MAI symptoms – lots of fatigue and weakness, fever, lung pains, coughing etc. Unfortunately, my GP/primary doctor and I just discovered that M. Intracellulare was found in a bronchoscopy I had at a different hospital more than 3 years ago but they messed up and didn't send the results to my doctor or me. So I've been left untreated but getting worse for more than 3 years. I've been unable to work for nearly 3 months now — I tried but couldn't make it through a day. I'm older than you Terri, I'm 65, but had previously been working well and planned to continue — a 'young 65' LOL — but now I need to retire. I've got some complications to work around: recurring vasculitis (skin) that needs immunosupressive treatment – not good with NTM. And I'm hypothyroid so some drugs interact with my thyroid meds.

Anyway, my heart goes out to everyone posting on this site and I wish us all the best. This is the best forum group I've found online – the kindest people. Thank you all for your support for all of us. Hugs, Annie

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hi @anniepie It is difficult getting a dr who knows lots about this. I think if your scan shows alot of MAI then they will want to treat with the big 3, however if your MAI is minimal they will look at other methods or a wait and see approach. I hope you can get this sorted. This is a great forum, we are very lucky. Hugs Heather

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1 reply
Jo Ann K | @jkiemen | Nov 28, 2018
In reply to @america "Hi guys, I am still struggling with sore throat and can’t seem to get over this...." + (show)
@america

Hi guys, I am still struggling with sore throat and can’t seem to get over this. My daughter who is an RN told me to try a dyflucan because it could be a yeast infection in my throat. I have not heard of this before in the throat but I took one last night. I will see what happens. I am also seeing my Primary Care again tomorrow. It has been a long month for me and hope this is all going to be better soon. Has anyone heard of yeast in the throat? Stay well everyone Rita.

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@windwalker Be careful mixing Diflucan with Azithromycin. There is the Long QT thing with medications you have to watch for.

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america | @america | Nov 28, 2018

Thanks Terri I will, at the moment I’m not on any antibiotics because of my throat. But I will remember that.

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xfirerose | @xfirerose | Nov 29, 2018
In reply to @america "Hi guys, I am still struggling with sore throat and can’t seem to get over this...." + (show)
@america

Hi guys, I am still struggling with sore throat and can’t seem to get over this. My daughter who is an RN told me to try a dyflucan because it could be a yeast infection in my throat. I have not heard of this before in the throat but I took one last night. I will see what happens. I am also seeing my Primary Care again tomorrow. It has been a long month for me and hope this is all going to be better soon. Has anyone heard of yeast in the throat? Stay well everyone Rita.

Jump to this post

@america, I have had a battle with thrush in my mouth and throat. It finally took a round of two antifungal drugs to finally get rid of it. I also have CVID and I am on antibiotics frequently. These and steroids start my thrush infections. When it is in my throat I gag and have a hard time swallowing.

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2 replies
america | @america | Nov 29, 2018
In reply to @xfirerose "@america, I have had a battle with thrush in my mouth and throat. It finally took..." + (show)
@xfirerose

@america, I have had a battle with thrush in my mouth and throat. It finally took a round of two antifungal drugs to finally get rid of it. I also have CVID and I am on antibiotics frequently. These and steroids start my thrush infections. When it is in my throat I gag and have a hard time swallowing.

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Thanks I going to the doctor today. I hope he can figure what’s going on. Thanks Rita

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1 reply
boomerexpert | @boomerexpert | Nov 29, 2018
In reply to @heathert "hi @anniepie It is difficult getting a dr who knows lots about this. I think if..." + (show)
@heathert

hi @anniepie It is difficult getting a dr who knows lots about this. I think if your scan shows alot of MAI then they will want to treat with the big 3, however if your MAI is minimal they will look at other methods or a wait and see approach. I hope you can get this sorted. This is a great forum, we are very lucky. Hugs Heather

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@anniepie @heathert in my case doc decided against medication based on symptomology…I'm asymptomatic so no meds needed

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Brenda R. | @brigby | Nov 29, 2018

@boomerexpert @heathert , Hi there, I am curious when you say “asymptomatic”. My dr and I will need to decide soon whether to start Big 3 or not. I’ve had MAC avium in lungs diagnosed in 2016, and now m. Abscessus has moved into my lungs (already in sinuses.) currently I’m asymptomatic, except for flu-like body aches and fatigue. Historically, I’ll have aches, quickly followed by fever, exacerbation. But I’m “stalled” at extreme aches for the past 7 days! Keep wondering if abscessus has disseminated to my blood or digestive system, or what in the world this could be? Taking Tylenol and trying to fit through it and not miss work, but it’s tough. I have GERD and DDD, but no other co-morbidities. I’m in touch with my dr. at Stanford and will see ID doctor in January, but just wondering are these tremendous aches part of the m. Abscessus? Thanks for any thoughts

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boomerexpert | @boomerexpert | Nov 29, 2018

@brigby I don't as yet have abscessus so can't provide info on that, but sounds like you are symptomatic…I have none…no cough…no flu-like body aches…etc. so truly asymptomatic thus not in need of treatment at this time…

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1 reply
heathert | @heathert | Nov 29, 2018

@brigby sorry I am unable to help as I have not has absessus. I have been achy on and off but thought it was my medication or anxiety doing it. I hope you can get this sorted soon.

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1 reply
Brenda R. | @brigby | Nov 29, 2018
In reply to @boomerexpert "@brigby I don't as yet have abscessus so can't provide info on that, but sounds like..." + (show)
@boomerexpert

@brigby I don't as yet have abscessus so can't provide info on that, but sounds like you are symptomatic…I have none…no cough…no flu-like body aches…etc. so truly asymptomatic thus not in need of treatment at this time…

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@boomerexpert Well then that’s great, you go, girl!!

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Brenda R. | @brigby | Nov 29, 2018
In reply to @heathert "@brigby sorry I am unable to help as I have not has absessus. I have been..." + (show)
@heathert

@brigby sorry I am unable to help as I have not has absessus. I have been achy on and off but thought it was my medication or anxiety doing it. I hope you can get this sorted soon.

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@heathert thanks to you both for your responses. God Bless and keep you!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 30, 2018
In reply to @pkayh "Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc...." + (show)
@pkayh

Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don’t seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It’s the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities – Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don’t I will be able to do less and less.

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@pkayh, Pat, everything you wrote here sounds just like me; right down to the painting and cooking. And, gratefully, my husband loves to cook also.

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