1. < MAC & Bronchiectasis

(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.

Jo Ann K | @jkiemen | Jun 20, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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@pfists What is the ginger recipe?

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Jo Ann K | @jkiemen | Jun 20, 2018

It is amazing to see how we are all searching for an treatment with as many things we can get our hands on because the lack of progress in Medical Research to come up with at better treatment. We seem willing to try anything and everything.

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2 replies
pfists | @pfists | Jun 20, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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@jkiemen
Sorry this was in response to @nick52 post
Here is the recipe. Very easy to make

"the Tibetan doctor told me to take every morning before breakfast ( cut pieces of ginger in 10 ounce of water and boil it with a teaspoon of honey let it steep.)"

The longer it steps the stronger it gets.
Good for digestion and inflammation
Immune stimulate.
Shari

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Flib | @flib | Jun 20, 2018
In reply to @jkiemen "It is amazing to see how we are all searching for an treatment with as many..." + (show)
@jkiemen

It is amazing to see how we are all searching for an treatment with as many things we can get our hands on because the lack of progress in Medical Research to come up with at better treatment. We seem willing to try anything and everything.

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Trying gives one hope. My doctor told me there was nothing more she could do for me. That's when I got busy.

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yayaaz | @yayaaz | Jun 20, 2018
In reply to @alleycatkate "@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as..." + (show)
@alleycatkate

@pfists. Hi Sharri...I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC....just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures...but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

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Nick,
I don’t know what NTM is.
I don’t where all of you go to research everything. I am at such a loss. Any input from anyone would be helpful.
Thanks, renee

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)
@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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@unicorn and @soflo, that is so true; the more exercise the better. In my mind, I say to my lungs (when I exercise) "This is what I expect of you, and you"d better step up to the plate."

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)
@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

Jump to this post

@nick52 Something tells me that your next exam will be great.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @boomerexpert "Hey @soflo take some time to look through the posts here...you will find many alternatives to..." + (show)
@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, This site is better than Facebook. We have moderators on here that try to make sure that everyo e is getting the straight 'dope' so to speak.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @boomerexpert "Hey @soflo take some time to look through the posts here...you will find many alternatives to..." + (show)
@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.

Jump to this post

@soflo is this near you?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018
In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)
@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

Jump to this post

@nick52 Hi. Do I unferstand you right, your brother had a double lung transplant? Why?

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