(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

@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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@alleycatkate a little bit of info on LICORICE CAUTION:  Licorice should not be used by persons with diabetes, glaucoma, high blood pressure, severe menstrual problems, or a history of stroke.  Should not be used on a daily basis for more than seven days in

a row, as this can result in high blood pressure in persons with previously normal blood pressure.  Extended use can cause high blood pressure, water retention, and low potassium levels.  LICORICE CANDY DOES NOT WORK FOR MEDICINAL PURPOSES BECAUSE IT IS MOSTLY

MADE WITH ANISE, NOT LICORICE!(Dr Balch)  Hope this is helpful! Nick.

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@auntnanny

windwalker …… I just picked up my culture report which says "Few Mycobacterium avium complex isolated"…… I'm faxing it on to Mayo's but wondering if this will mean I will have to start with heavier meds. Your opinion????

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Why not try probiotic auntnanny!

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@heathert

Hiya just found this interesting article in the cystic fibrosis news , basically how adding the MS drug Glatiramer to tobramycin, , the killing efficiency increased by up to 71%!!! https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/

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@kathleen.  Do you know the website www. ….org they gave at the end of the webinar today? Got it wrong? Nick

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@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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Hi Everyone,

The webinar today Dr Daley confirm the same thing my doctor said: ASPIRATION (gastric Acid) can be the cause for NTM so we need to fight bacteria by keeping an Alkaline stomach (gerd is a bacteria) and one proven cure is a good diet (low acid more alkaline)

and probiotic specific for digestive system.  Dr Ohirra professionnal is a good one. A toxic liver will give your stomach an acid stomach prone to all kinds of bacteria.  It was a good webinar. @windwlaker ginger is good for digestion here is the recipe that

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.)   I would be curious to know HOW MANY OF USE HAVE STOMACH ISSUES?   If you haven’t been on the

webinar conference listen to it in a couple weeks.

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@alleycatkate

@boomerexpert ..Thank you!! Will be adding DGL to my never ending list (haha) of things to get for this disease! Appreciate you sharing!
Kate

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I,too, have a long list. Barely have time to get everything in. Not complaining. Some things really work.

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@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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@nick52
I have been using this ginger recipe for a year now. It tastes great and you can add lemon to it also.
Just a added note ginger is great to boost your immune system that is what I have been using it mainly for.
I have had stomach issues in the past but doing well now.
Shari

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@alleycatkate

@boomerexpert ..Thank you!! Will be adding DGL to my never ending list (haha) of things to get for this disease! Appreciate you sharing!
Kate

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I have the DGL in the cupboard also II use it as needed.
Some people may have H pylori bacteria in their stomach too you can be tested by Dr for it. I was treated in the past for it but unfortunately it was with three antibiotics for a week.
Shari

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@heathert

Hiya just found this interesting article in the cystic fibrosis news , basically how adding the MS drug Glatiramer to tobramycin, , the killing efficiency increased by up to 71%!!! https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/

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@lindam272 Yes please let us know how you get on, very interesting article. Heather

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@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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@nick52 I have been on the big 3 for years and have constantly had stomach issues, I have been on 40mg omeprazole for years also, it helps, glad they spoke about it at the webinar, I will. Will it also kill all the good gut bacteria also?

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@windwalker

@heathert, Hello Heather. Thank you for this post, it was an interesting read. I added it to my notes on medications. Everyone, do note, that this medication is used when pseudomonas aeruginosa has become RESISTANT to using tobramycin alone. These are good notes to collect in case any of us are ever in that situation; and we could be at some point. I think it is great that you subscribe to CF News Today, as having bronchiectasis is very similar to CF. Many of the drugs used to treat CF is also used for us with broch/mac. I subscribed to that publication as well, thanks to you! This will help us stay on track with what new meds and treatments are coming out. Kudos Heather!

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@windwalker Hi Terri thanks for adding it to your meds list, you never know when we might need it.

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@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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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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