(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

@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?

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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!!

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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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Yayy Terri on the fb page

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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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Stupid question, I just stumbled across all of you so when I get off how do I get back in the group. You are all amazing and I am thankful that I now can share with others. Terri I live in South Florida and yes I have bronchietsis as well. Oh and how can I get started on the saline treatment?

REPLY
@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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Sorry, I’m responding all over the place. I do have bronchiectasis. I took three pills for two weeks but I couldn’t continue. I have a hard time breathing sometimes, I am very tired at times after work so I nap, I cough up mucus in the morning but I don’t have a cough. I told my drs that I do get a chill through my body once in while and I get night sweats at times.

REPLY
@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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Hi @soflo, welcome to Mayo Clinic Connect. You are following the MAC group and should be receiving email notifications when now posts are made. Here is the link to the MAC & Bronchiectasis group: https://connect.mayoclinic.org/group/mac-bronchiectasis/

There's a lot of information archived in the many discussions. Members are very helpful and informed in this group and ready to answer your questions.

To get the most out of Connect, you can find more tips on how it works here: https://connect.mayoclinic.org/get-started-on-connect/

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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 Hi, I read your post to Terri. I am new too. I just started the big 3 treatment, my doctor had me start the first antibiotic three days a week, Mon Wed & Fri for two weeks, then I will start the 2nd one the same way, then the third one the same way, it gives your body a chance to adjust to them before adding the next one. I just finished the two weeks with the first one, Azithromycin, starting Rifampin tomorrow, for two weeks then Ethambutol. So far I have no side effects. I am also doing the Nebulizer with Albuterol, the Capella that you blow through, & laying on a slant downward on your back for 5 min & again on your stomach for 5 min. These exercises promote clearing the mucus from your lungs, I also don’t cough up much mucus unless I do these exercises with the nebulizer. I am feeling better already, I have more energy & able to do the things I like & normally did, like riding my horse 3 times a week & gardening two days a week. Most importantly, “Keep a positive attitude”.

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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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I am glad to hear that you are not experiencing any side effects from your new antibiotics. My husband will probably start on the big 3 at the end of the month. We are currently waiting for the results from his bronchoscopy which was sent out to the Jewish Institute in Colorado. Are these antibiotics expensive. We have Medicare and a very good supplemental that normally pays 80 – 90%.

REPLY
@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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@windwalker, please let me know when your face book page is up. I follow your posts here but sometimes I find it difficult.
I live in Spring Hill Fl and I am really in need of good Dr’s who have knowledge on MAC with the cavitations and bronchitis? Not sure I spelled that last on correct. Does it take a long time to get into the Mayo Clinic? I did 1 year of the big 3 and I just could not continue the treatment 7 days a week!
Now I am horrified of what is to come next. My ID Dr has not treated anyone before me and my pulmonary Dr is very old school and I never got a clear answer as to if he has treated others like me.

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