(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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I have to tell you, I think if I had to do it over, I would have asked them to start treating me earlier with the Big Three and not waited until more and worse changes showed on the CT. For some reason, I think it would have protected the areas that had not yet been affected. My CT done last week showed slight improvement after treatment with 6 months of the medications. I have to be glad it was not ongoing worsening but I guess I hoped for more improvement. My Pulmonologist tells me it takes a long time for things to improve or show improvement. So I wish I would have treated it when the changes were a bit more subtle and got it earlier.

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@sophie1019

At first I had two large cavities. With the meds, the oNE cavity went away, the second got smaller, so the doc decided to take me off. I was not sick with the two cavities, I did hAve shortness of breath, though…

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I had a reaction to Rifabutin early on as well. Terrible aches. I had to take Rifampin, Azithromycin and Ethambutol

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Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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@ boomerexpert, Thank you for stepping up to answer @soflo. I hope that you are doing alright.

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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@soflo, Hello Dee, welcome to our Connect group. I certainly understand your fear from your diagnosis. Keep in mind that much of what you read when you Google any info is either out-dated or has out-dated thoughts on how to treat mac. My doctor believes that automatically putting people on the 'Big 3' is overkill unless they have many colonies growing and cavities forming in the lungs. He put me on two lighter antibiotics with no side effects for me. My pulmonologosts is with the Mayo Clinic which is a research clinic and hospital. They are world-renown and well respected. Please read over my past posts and you will get a lot of info. If you click on my picture; all of my posts will come up. I was diagnosed 13 yrs ago with MAC and had pseudomonas and another black fungus crop up a ew yrs ago. I coughed non-stop for years, couldn't walk 20 ft., and was pre-qualified for a double lung transplant 2 yrs ago. Today, I can ride my bicycle 12 miles, I can walk many blocks (level ground) without being out of breath. I still have bronchiectasis, get short of breath with strenuous exercise, or going up stairs; and I still suffer unrelenting fatigue. Overall, my quality of life has greatly improved. Most patients with mac; also have bronchiectasis. Do you know if you have that as well?

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Who do you see at the Mayo? And which one do you go to?

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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Thankyou so much for responding. I do have bronchiectasis as well :(…I started the 3 pills for 2 wks and got ill. I was told I have nodules on my lungs, is that what you mean by cavities? Which meds do you take now. I’m so scared and confused about stopping the 3 or doing another treatment. I worry about how fast will my lungs deteriorate? My pulmonologist said I have plenty of lungs left, I’m 52, and he was more against treating because it returns and is hard on the body but my infectiuos desease dr put me on biaxin, rifabutin and ethambutol at first visit but I had to stop I just got ill. I don’t cought. I do have mucus come up in the am, I am very tired when I get home from work and my breathing is heavy at times. Gosh will that get worse if I don’t do treatment? I also wonder what else can I do/take to be proactive? I’m sorry for all the questions, I just am worried about the future 🙁

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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Yes thankyou so much for responding. Wow, you are taking antibiotics for over 2 years? Hope you are doing well :)… I don’t want to continue with the 3. I want to be as proactive as I can so that I can have a good/decent quality of life but I am so overwhelmed at times and don’t know what to listen to 🙁

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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Do you have a fb group? I wish you would :)….Things like this are easier when you know you are not going through it alone.

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input….Dee

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@barbjh Good morning Barb. I see Dr. Leventhal at the Jacksonville, Fl. location. BTW, he has given me permission to quote him on what I post in these pages. Is your mac stable at the moment? -Terri

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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@bleo Hi Betty. How are you feeling?

Liked by ginak, soflo

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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@soflo I could give you better suggestions if I knew more about where you are with your disease. How sick are you at the moment? Do you have bronchiectasis?

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@boomerexpert

Hey @soflo take some time to look through the posts here…you will find many alternatives to the "big 3" that others' docs have used on our members with success. There are alternatives: for instance this post from @windwalker; "My current doctor doesn't believe in prescribing the big three, his method of treatment is alternating one antibiotic every other month using a different antibiotic on the off month. This method seems to be working for me so far….I have been on this regimen since 2013. I have steadily been improving." Or this from @pfists: "I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way." Plus there's complementary therapies, for which one of our members states she "usually turn(s) to NIH's National Center for Complementary and Integrated Medicine (NCCIH). Find a variety of options then present them to your doc…if s/he won't do anything but the big 3, find another doc.

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@soflo, First and foremost, if you are not doing the nebulized saline treatments, you probably should be. It is straight up salty mist, not a medication. Research shows that this does help in making the mac recede. My dr has me on 7% sodium chloride (saline).

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@windwalker …bless your heart for all the work you do to help us cope and get better. I cannot tell you how uplifting your post was that said using a saline solution and nebulizer makes a very hostile environment for MAC. I feel as though i regained my sanity reading that! Looking forward to your FB page!!

Liked by soflo

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