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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!

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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!

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

pfists | @pfists | May 4, 2019
In reply to @windwalker "@auntnanny Hi Jan. How are you doing these days? Are you feeling alright? I too know..." + (show)
@windwalker

@auntnanny Hi Jan. How are you doing these days? Are you feeling alright? I too know a woman who went in for regular bronchioscope washings and got better. That reminds me, I need to touch base with her and see of she is still having continued success from that.

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@windwalker
@auntnanny
I have been getting pretty regular washing with bronchoscopies.
Got one very 3-4 months last year one was yesterday.
I get allot of plugging because of asthma though. Now I'm on a injection once a month to halt all the mucus from asthma the injection is called nucala.
My pulmonologist did say he uses the washes to help keep the NTM out too. So I would be interested in what other doctors feel about this approach.
Shari

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1 reply
bevmac | @bevmac | May 4, 2019
In reply to @spencersok "@bevmac Should would like to know what type of treatment your doctor provided for the cough...." + (show)
@spencersok

@bevmac Should would like to know what type of treatment your doctor provided for the cough. My wife coughs terribly until her stomach and side hurt. Cost of the medication is not a problem for us. Thanks for any information your doctor can provide.

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spencersok - After 8 months coughing violently, and being diagnosed with MAC, my complementary medicine doctor Dr. Elen Apthomas at the Medical Sanctuary in Ashmore, Queensland, Australia, initially gave me celery juice 300 mis 30 minutes before food in the morning, a B12 injection, a supplement called SAMe, a Bio zinc formulation, and a high powered probiotic. I stopped coughing quite quickly - 3 to 7 days, even though I am taking the big 3 drugs for 18 months. I take these preparations on the days I am not taking the antibiotics - 4 days per week. I think you could shop around for a complementary medicine doctor. Dr. Andrew Weil in the USA would fall into that category. So far after 3 months taking antibiotics, other than needing an afternoon snooze, I have had no side effects. The supplements my doctor gives me are mostly only available to doctors. My lung specialist, does not give these supplements a lot of credit, however he does tag her in my regular blood tests. Every three months Dr. Elen changes what I am taking - with the goal of improving my immune system. I am paying Dr. Elen around $400 every three months - cheaper than a funeral. 🤪😆🧐

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bevmac | @bevmac | May 4, 2019
In reply to @nannette "@bevmac Thank you so much!!! I've had two doctors and neither one of them have had..." + (show)
@nannette

@bevmac Thank you so much!!! I've had two doctors and neither one of them have had any luck with my cough so I'm going to try your doctor's supplements and see what happens! Nan (@nannette)

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I would try a complementary medicine doctor - my doctor is on the ball, and she does not use over the counter stuff - but the best researched quality - specially tailored for me and my situation.

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sounder27 | @sounder27 | May 4, 2019
In reply to @auntnanny "windwalker -- thank you for asking. I a, trying to do 30 days of toby right..." + (show)
@auntnanny

windwalker -- thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great -- I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying...…. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy -- Walgreens -- and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).

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To auntnanny. What is Toby?? I am couching so violently that I vomit. And my nose gets stuffed up as well. I have been taking tessalon pearl but it doesn’t seem to be doing the trick anymore. I am interested in anything new that does not interfere with my heart meds or agravate my afib. I have both bronchiectisis and Mac. I recently coughed so hard that I injured my ribs and when I cough now it causes pain in my ribs and chest.

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auntnanny | @auntnanny | May 4, 2019

sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but that it takes a few months. They recommended (to me) 4 weeks on and 4 weeks off. Then repeat for several months. Windwalker on this site has used it successfully and I'm trying. It is an inhaled antibiotic that goes directly to the lungs and I believe one bacteria it targets is pseudomonas (which I have). They asked me to use a different dispensing cup from the one that usually comes on a nebulizer. This one breaks it down into a fine mist. I believe it is available (not costly) on Amazon and I'll get the name of it if you are interested. I told Mayo Doctor I had been on this two weeks and was still coughing and he assured me that we needed to stay longer. Two weeks would not take care of it. I just hope he's right. Perhaps Windwalker will come on and help you more with this product. I believe she said after using it she was cough free for a couple of years. Sounds like heaven to me. I believe tobramycin is an older antibiotic but the new way of getting it into your lungs seems to be what they feel is so important. I hope this is helpful to you in some way. Windwalker is also with Mayos (Florida) and I'm with them in Minnesota so I believe it is what they are recommending.

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sounder27 | @sounder27 | May 4, 2019
In reply to @auntnanny "sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but..." + (show)
@auntnanny

sounder27 Toby is short for the word tobramycin. Mayo's say they are having great results but that it takes a few months. They recommended (to me) 4 weeks on and 4 weeks off. Then repeat for several months. Windwalker on this site has used it successfully and I'm trying. It is an inhaled antibiotic that goes directly to the lungs and I believe one bacteria it targets is pseudomonas (which I have). They asked me to use a different dispensing cup from the one that usually comes on a nebulizer. This one breaks it down into a fine mist. I believe it is available (not costly) on Amazon and I'll get the name of it if you are interested. I told Mayo Doctor I had been on this two weeks and was still coughing and he assured me that we needed to stay longer. Two weeks would not take care of it. I just hope he's right. Perhaps Windwalker will come on and help you more with this product. I believe she said after using it she was cough free for a couple of years. Sounds like heaven to me. I believe tobramycin is an older antibiotic but the new way of getting it into your lungs seems to be what they feel is so important. I hope this is helpful to you in some way. Windwalker is also with Mayos (Florida) and I'm with them in Minnesota so I believe it is what they are recommending.

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To auntnanny. Thanks so much. I will mention this to my doc when I see him in 2 weeks. I don’t know how it will be with my afib. That seems to be the problem for me not taking the big 3. The mycin type drugs activate the arythmias and cause me to go into atrial flutter. But the delivery system sounds like maybe it would bypass a systemic reaction?? Here’s hoping. I’m willing to try whatever I can at this point.

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heathert | @heathert | May 4, 2019
In reply to @anniepie "@pfists @jkiemen @heathert @windwalker Thanks for following up on this Shari. We could have guessed as..." + (show)
@anniepie

@pfists @jkiemen @heathert @windwalker Thanks for following up on this Shari. We could have guessed as much from their website -- they seem to want to focus mostly on active cystic fibrosis.
Fairly similar numbers of people are diagnosed with NTMs each year compared to the numbers diagnosed with active cystic fibrosis. But those with active cystic fibrosis are diagnosed far younger, often as children. (NTMs are regarded as ONLY an 'old people's disease', although that isn't true -- 50% are younger than 65 and some are children).
There's been research around for 15 years that NO can reduce pseudomonas aeruginosa, but Vast has a new and better delivery system to try out.
The Vast Therapeutics study we looked at showed success with NTMs (https://cysticfibrosisnewstoday.com/2018/05/24/vast-therapeutics-bioc51-fares-well-mouse-studies/ or https://www.prnewswire.com/news-releases/vast-therapeutics-formerly-novoclem-announces-results-showing-eradication-of-all-in-vitro-tested-multi-drug-resistant-bacteria-and-a-99-reduction-of-nontuberculous-mycobacteria-ntm-in-animal-model-300652648.html).
Past methods for inhalation of ordinary NO gas didn't work to get rid of NTMs or TB, but this new controlled release system Vast has developed does seem to be effective with NTMs.
It's a shame that people with NTMs haven't got the political clout to lobby drug companies to promptly pursue successful research results for NTMs. I wish there was something we could all do about that!!!
Anyway, there seems to be another study with NO for people with NTMs underway at University of South Carolina in 2018-2019, although it's not clear if they're using the new controlled release systems or not: 'A Proof of Concept Study of Inhaled Nitric Oxide for Adults With Pulmonary Non-Tuberculous Mycobacterial Infection' -- https://clinicaltrials.gov/ct2/show/NCT03748992 . (Principal Investigator: Patrick Flume, Medical University of South Carolina). Does anyone know anything about this trial?

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Thanks @anniepie Its so frustrating when they do not trial on NTM, this could be great for us.

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auntnanny | @auntnanny | May 4, 2019

sounder27 Please let me know what your doctor says

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1 reply
janovr | @janovr | May 4, 2019
In reply to @spencersok "@bevmac Should would like to know what type of treatment your doctor provided for the cough...." + (show)
@spencersok

@bevmac Should would like to know what type of treatment your doctor provided for the cough. My wife coughs terribly until her stomach and side hurt. Cost of the medication is not a problem for us. Thanks for any information your doctor can provide.

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@spencernok

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