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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 Support Group.

esssbeee | @esssbeee | Nov 13, 2019

My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2019
In reply to @gj53 "I am trying to categorize these posts newest to oldest and unsure how to do that?" + (show)
@gj53

I am trying to categorize these posts newest to oldest and unsure how to do that?

Jump to this post

@gj53, Hi there. Try scrolling to the top of this thread, there, you should see a box on the right hand side of the page it will say oldest to newest with a drop arrow. Press the arrow and another choice will drop down. Click on the 'Newest to oldest' choice. That will get you there.

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janovr | @janovr | Nov 13, 2019
In reply to @esssbeee "My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet...." + (show)
@esssbeee

My nausea isn’t extreme but it isn’t caused by antibiotics because I’m not on any yet. I’ve lost about 20 pounds because there are times food doesn’t interest me. My MAC symptoms are mild compared to what others are experiencing. Best wishes!

Jump to this post

@essbee .... my nausea is EXTREME. I have done EVERYTHING I know to do. I am not on any medicine as I could not tolerate it in 2015. My sputum culture just came back positive... after being negative in April. I have no symptoms other than the nausea.
Sofran is not touching it!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2019
In reply to @anniepie "@windwalker Yes -- here's hoping the treatment I'm on works. I wish I had a doctor..." + (show)
@anniepie

@windwalker Yes -- here's hoping the treatment I'm on works. I wish I had a doctor like Dr Leventhal! Right back at the beginning, I mentioned your drug protocol and treatment success to my pulmonary specialist; who specialises in NTMs and TB. I was really hoping I could try something like the protocol you had. But she didn't agree with it, which is a real shame.
It seems a lot, maybe most, pulmonologists want to just stick with the Big 3 the American Thoracic Society (ATS) pushes as the standard protocol.
In Australia susceptibility testing to each of the Big 3 drugs isn't usually done, or other drugs. They only test for susceptibility to one drug. They do in-vitro testing which is certainly better than no testing, but isn't much good when you have a heavy biofilm disease like M. Intracellulare. Unfortunately, I've been a public/medicare patient, so I didn't get much choice about the tests.
I think Dr Leventhal must have been a really good and courageous doctor to go against the powerful ATS lobby. And obviously he knew what he was doing and listened to his patients' concerns. I really hope your new doctor is as open-minded as he was. And above all else, stay well Terri -- that's the best solution

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@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why your health care system wouldn't do a susceptibility test on all three of the drugs. I do not know so much that Dr. Leventhal was courageous for prescribing me the way he did; as the ATS lobby doesn't affect him. He worked for Mayo Clinic with is a non-profit research institution. Which means they try different things to treat diseases in order to discover better ways to combat them. He told me when I first saw him that we could try this method and if it did not work, then we could go to the standard way of using the Big 3. I think that some strains of mac are more serious and my regimen probably wouldn't get rid of it. Dr. Leventhal retired this past August, so I am curious about meeting his replacement this summer. He told me that he had been grooming her with his thought processes on how to treat NTM (mac). I read some of her publications and she seems to be very passionate about this particular disease. Are you free of the smoke from the wildfires in your country? I hope so!

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 13, 2019
In reply to @jml060448 "Thank you for the information. Yes I am on the three antibiotic treatment MWF, hoping it..." + (show)
@jml060448

Thank you for the information. Yes I am on the three antibiotic treatment MWF, hoping it works.

Jump to this post

@jml060448 Hi John. Did you get a chance to visit the Discussion Board and see the list of topics?

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janovr | @janovr | Nov 13, 2019
In reply to @kathyhg "Wondering if anyone can help me out in this. II experiences significant nausea before starting on..." + (show)
@kathyhg

Wondering if anyone can help me out in this. II experiences significant nausea before starting on medication (big 3) last February. My nausea went away after a few weeks in the medication but started when I had to stop them in August due to side effects. The nausea started a couple of weeks after stopping and has persisted, although not as bad as it was prior to the medications.

Is this a symptom of Mac? I’ve had some GI testing done but nothing shows up so I’m thinking it’s the Mac. I’d appreciate any comments on this.

Thanks in advance!

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@kathyhg ... I too am EXTREMELY nauseated ... debilitating !
I could not tolerate the medicine in 2015 due to nausea. My nausea is debilitating today.
Nothing helps!😩

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2 replies
esssbeee | @esssbeee | Nov 13, 2019

I am so sorry you are experiencing such difficult symptoms. This disease affects each of us in somewhat unique ways. I guess all we can do is let doctors try whatever is out there to help us control the worst symptoms. It’s my understanding that there is no cure for MAC and the best we can hope for is remission for as long a period as possible.......usually over and over again. Personally, experiencing a positive quality of life is more important (to me) than being cured. I believe that is possible but certainly involves trial and error experiences! Best wishes!

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heathert | @heathert | Nov 13, 2019
In reply to @janovr "@kathyhg ... I too am EXTREMELY nauseated ... debilitating ! I could not tolerate the medicine..." + (show)
@janovr

@kathyhg ... I too am EXTREMELY nauseated ... debilitating !
I could not tolerate the medicine in 2015 due to nausea. My nausea is debilitating today.
Nothing helps!😩

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@kathyhg Sorry to hear that, I only had nausea on the meds not off but I found ginger lollies and licorice and ginger tea helped alot.

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Helen L/Orlando | @hsletter | Nov 13, 2019
In reply to @windwalker "@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why..." + (show)
@windwalker

@anniepie, Hi Annie. I am trying my best to stay well! I do not understand why your health care system wouldn't do a susceptibility test on all three of the drugs. I do not know so much that Dr. Leventhal was courageous for prescribing me the way he did; as the ATS lobby doesn't affect him. He worked for Mayo Clinic with is a non-profit research institution. Which means they try different things to treat diseases in order to discover better ways to combat them. He told me when I first saw him that we could try this method and if it did not work, then we could go to the standard way of using the Big 3. I think that some strains of mac are more serious and my regimen probably wouldn't get rid of it. Dr. Leventhal retired this past August, so I am curious about meeting his replacement this summer. He told me that he had been grooming her with his thought processes on how to treat NTM (mac). I read some of her publications and she seems to be very passionate about this particular disease. Are you free of the smoke from the wildfires in your country? I hope so!

Jump to this post

@windwalker Terri, are you talking about the Mayo Clinic in Jacksonville? What is Dr. Levanthal's replacements name please?

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1 reply
kathyhg | @kathyhg | Nov 13, 2019

Thanks to everyone for their responses to my question re: nausea. I’m hopeful that my nausea is from the Mac and not anything else so your responses were reassuring to me.
I hadn’t realized how much weight I lost before being diagnosed with Mac but I’m learning about how important it is to maintain a healthy weight. I’ve gained close to 20 pounds since starting treatment and I eat through the nausea so I can keep the weight on. I hope that the extra weight helps to keep me healthier.
This disease is certainly complex!

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