(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

@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi America. I also have bronch and MAC. No fun. Took the meds for year and a half and had to stop. It takes awhile for your body to adjust being off the meds. Also. the meds don't really cure, they just slow the MAC down. When I first got off meds I felt like passing out, but all that passes. I saw a doc at Mass. General who put me on a saline inhalant, and exercise. Have to keep the lungs as clear of mucus as possible, because that can cause infection. Saline helps bring it up. So now I do that everyday. I also got very thin but have regulated , at a lower weight. which I kind of dig. I was never fat, but now I can eat anything and everything, goes right through me because of how the meds left me. It is really a terrible pill regimen, but it is all that they have now. Until something new is discovered we just hang on. do all the things for maintenance that are done on this sight. You will have to avoid sick people and hospitals, wash things with distilled water, etc. The name of the game is stay healthy and don't get pneumonia. Make sure all your shots are current. xo

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@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@america welcome to our chat group! A good place to ask question. I have bronchiectasis and had Mac but am asymptomatic right now and my lungs doesn’t give me any symptom.  I have never taken any medication for it instead I treated the symptom with natural

med. if you can’t take the antibiotics,  do you know you can take natural medicine or herbal med. to clear your lung.  This is what I have done to be in control of the infections. If you have infections in your lung you will feel weak and have a lot of fatigue.

I am so sorry for you !  I will keep you in my prayer an make an earnest plea for you to be guided by the divine energy to find a solution for you. I live in New Brunswick Canada! Nick 52

Liked by alleycatkate

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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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@alleycatkate in response to your post about probiotic 45 billions are a very good one. I am sure it has many living good bacteria for you immune system.  I take Dr Ohirra’s professionnal probiotic it means it has been fermented for 5 years and the regular

one was fermented for 3 years.  According to the pharmacist here it is one of the most effective one.  It doesn’t have the same ingredient as any others. It doesn’t talk about strains etc. You can check it on Dr

Ohirra.com. MAC is a bacteria and GERD is an acid reflux that can be cause because your liver doesn’t digest the biles as it should.  My husband was the same way (he’s a chocolate lover like you lol) some nights he had to sit

in the bed because of the Acid reflux. His doctor told him that the stopper in the oesophage wasn’t closing (I am trying to explain hope you understand lol) and it was the reason why the reflux was coming up and he was born with it! Hello! I said to him this

is bullshot” I started to treat him with Milk Thistle From Hübner and he doesn’t have to sit to sleep since.  So You might want to consider that option.  Use the brown liquid formula from Hübner.  You can order from the internet.  I tried the pills and the

alcohol drops but they are not effective like the brown liquid.  You have nothing to loose! Nick

Liked by alleycatkate

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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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@nick…You are right…nothing to lose…I will get the milk thistle. Thank you so much for your advice on this. I do get the little flapper thing..lol.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@america I'm glad you found us. First, I recommend perusing the posts here…you will find there's many alternatives to the "big 3" some of which may work for you to reduce your infection (most likely the source of your fatigue)…then find a doc willing to work with you on trying these alternatives. Next, I have MAC and RA…as a result I have adrenal fatigue (also common in folks with chronic disorders)…for that I take ashwaganda – works very well to improve my energy level. Finally, I, and others here, have found natural/alternative remedies that have helped us – I use acupuncture and CBD oil.
Not only are you not alone, you'll find some answers here!

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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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@alleycatkate the little flapper thing lol I like that ! I know you understood what I meant .  Use the good one. I think you can only get it on the internet. It is made in Canada. 

https://goodnessme.ca/products/hubner-milk-thistle-500ml. I haven’t find it in the United State. Take the right one. Nick

Liked by nick52, alleycatkate

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@boomerexpert where to you get your CBD oil

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi, @boomerexpert – Are you using CBD oil for your MAC or RA? If MAC, how does that help? I have wondered about it and haven't heard anyone using it for issues like ours until now. Thanks! Linda M

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert – Hi there! I have Bronch, MAC avium in lungs, NTM abscessus in sinuses. Have not had to start 3 drug regimen. Can I ask you what does the CBD oil help with?

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@brigby as you've noted I also have RA…CBD reduces inflammation…if you know you have inflammation as a result of your lung conditions, this will help.

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Anyone…Question on Clear Lung by Ridgecrest. Do most using this preparation use it continually or do you just use as needed for breathing difficulties, colds, excess phlegm… etc? Thanks for thoughts on this.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@boomerexpert -Thank you so much. God Bless you and keep you well.

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@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Thanks so much Unicorn. I feel really happy to hear and know that I’m not alone. I also have RA and Sjogrens and it’s tough to deal with so many things at the same time. But I know it’s going to get better with time and talking with you all. I’m so excited to be a part of this. I would love to try anything new so I’m open to new ideas. Thanks.

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@jkiemen

@america You came to the right place. We all understand about the disease and all have similar but yet different stories and severity of illness. It impacts your physical and emotional health. Some of us are on the Medications, some tolerate and others do not. Tell us more about yourself. How did you discover it, how advanced was it, what meds where you on?. What are you doing for treatment now?

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Thanks nick52

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