(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 – I just Googled the name when I couldn't find on Amazon. You will see options for ordering when you do that. Let me know if you still don't and I'll try again. I've never ordered but wanted to have the info for if/when needed. Linda

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@america

I tried amazon and all the pharmacies on line… no one carries it in the USA! I’m not sure how to get. Thanks Rita

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@america…when you go to Amazon put “strepsils lozenges” in the search box and they should be displayed. Hope that helps. Yaggi 01

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@lindam272

@america – I just Googled the name when I couldn't find on Amazon. You will see options for ordering when you do that. Let me know if you still don't and I'll try again. I've never ordered but wanted to have the info for if/when needed. Linda

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Thanks much! I try again. Rita

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@nick52

@pamelasc1

Dear Pamela,
I am glad to hear from you. ! At the beginning I took as prescribe for a full month then 2 to 3 times a week for another month then I went with 1 to two twice a week for another month. After I was taking some when I felt a little change with my respiration or when I had more mucus. I still do the same but I do not take it every day anymore. If you can take only the powder without the pills that I have no idea. I suggest you call the number I gave you for a proper answer.
Love Nicole

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Thanks so much for this info on taking Clear Lungs. I did call the company and they said it was fine to mix the powder in yogurt or applesauce, so I have done that. I will hope I see a difference soon! Best to you, Pamela

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I have just been told I have Mycobacterium Gordonae anyone have this that can share their journey

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@irene5

@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but when we lived in Tennessee (Clarksville) I was seen at Vanderbilt and thought the ID doctor I saw there was thorough, knowledgeable, and kind. I’m sure the Mayo in Jacksonville is exemplary as well. (irene5)

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@irene5 Hi, yes would you mind to share the name of any docs in Nashville who treated you for your condition. We live close to Clarksville but use Nashville doc’s for most of our care. Thanks for sharing, Yaggi01

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@nick52

@spencersok, if she can take the big 3 find natural medicine to help her cough. For example Clear Lung with Ridgecrest is good to clear lung congestion, probiotics are also helpful for infections, etc. Consult a naturopath they can help her probably more than the big 3 in her case. She needs to stay away from mucus forming food like dairy, fried food, sugar etc. Check the internet they will tell you which food forms mucus. Many people can’t take medication. There body reject it because it is not for them. I have bronchiectasis and had the MAC and never taken medication but I do use natural medicine. She has nothing to loose trying. Even a nature food store could probably hernher a bit. Medical doctor can’t help when your body react to medication (pharmacy). I will keep her in my prayers and as the highest to guide you to a solution. Have a lovely week!

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Which strength of Clear Lung did you use and when did you use it? I have trouble clearing mucus. Thanks!

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@jammer

I have just been told I have Mycobacterium Gordonae anyone have this that can share their journey

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@jammer Hello. I have not run across anybody on this site with Mycobacterium Gordonae. I did not want to leave you hanging, so I looked up articles in the http://www.nih.gov website and http://www.njh.org website. From what I have read, this particular mycobactrium is found in most tap water and usually does not cause health issues. It MAY, however, if you are immunocompromised. It can be treated similarly to MAC but for a shorter period like several months. It takes three weeks to grow this at a lab and there is another bacterium that looks just like this one and it DOES cause illness. It is called 'M. Scofulaceum'. Is it possible that you are infected with that one?

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I had a bronco done and the sample was sent to Jacksonville, FL to the Bureau of Public Health Laboratories and grew for 6 weeks and came back with Mycobacteium Gordonae . My ct scan and xray show that most of my lungs are infected. Waiting on my doctor to let me know the next step. I think he is sending me to Shands in Gainesville, FL because it is the closer than Jacksonville. I live North West of Orlando. I thank you so much for your info and will check out these web sites asap. I am SO SCARED the not knowing and waiting is the worst. I hope someone who has had this strain will reply with some more info.

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@jammer

I had a bronco done and the sample was sent to Jacksonville, FL to the Bureau of Public Health Laboratories and grew for 6 weeks and came back with Mycobacteium Gordonae . My ct scan and xray show that most of my lungs are infected. Waiting on my doctor to let me know the next step. I think he is sending me to Shands in Gainesville, FL because it is the closer than Jacksonville. I live North West of Orlando. I thank you so much for your info and will check out these web sites asap. I am SO SCARED the not knowing and waiting is the worst. I hope someone who has had this strain will reply with some more info.

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I had 3 sputum tests done with two of them showing positive for Gordonia polyisoprenivorans, which I think is related to what you are saying. My specialist says we are not going to treat it with antibiotics, but increase respiratory program to twice a day as I am not ill at this time. Good luck with your journey.

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@jammer

I had a bronco done and the sample was sent to Jacksonville, FL to the Bureau of Public Health Laboratories and grew for 6 weeks and came back with Mycobacteium Gordonae . My ct scan and xray show that most of my lungs are infected. Waiting on my doctor to let me know the next step. I think he is sending me to Shands in Gainesville, FL because it is the closer than Jacksonville. I live North West of Orlando. I thank you so much for your info and will check out these web sites asap. I am SO SCARED the not knowing and waiting is the worst. I hope someone who has had this strain will reply with some more info.

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@jammer we all understand the fright that accompanies a MAC dx…and the shock when we learn more about the very last-century standard treatment. The good news: you will find a number of alternatives here…docs who have tried a variety of less harsh treatments that work well. Glad you're here.

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I was diagnosed 3 years ago and have had no treatment. It was decided that because of my atrial fibrillation and extensive allergies with various antibiotics that I not be put on the big three as you call them. My Mac is progressing and I am coughing much more and having a great deal of difficulty moving the mucous. I also have the bronchiactisis??(spelling). Does anyone have suggestions for alternative treatments??

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@sounder27 i would like to share my experience with you. Just like you my specialist for infection didn’t want to give me any of the big 3 cocktail because of the severe side effects. In order to prevent being sicker I used alternatives medicine. I discover what is call Clear Lungs to keep my lungs clean of infections. I started taking Probiotic to clear the infection and used ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa) . You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. II am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. If you have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. Very interesting and it made a difference in my life. BUT THIS IS ME! I was diagnosed in 2010 with bronchiectasis after a severe pneumonia. MAC was discover few years later after a bronchoscopy. There is more alternative medicine outhere if you search for a solution. Good luck and keep searching for a solution. Do not hesitate if you have more questions. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

Liked by janovr, Jennifer

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@nick52

@sounder27 i would like to share my experience with you. Just like you my specialist for infection didn’t want to give me any of the big 3 cocktail because of the severe side effects. In order to prevent being sicker I used alternatives medicine. I discover what is call Clear Lungs to keep my lungs clean of infections. I started taking Probiotic to clear the infection and used ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa) . You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. II am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. If you have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. Very interesting and it made a difference in my life. BUT THIS IS ME! I was diagnosed in 2010 with bronchiectasis after a severe pneumonia. MAC was discover few years later after a bronchoscopy. There is more alternative medicine outhere if you search for a solution. Good luck and keep searching for a solution. Do not hesitate if you have more questions. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

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Thank you so much for all the information, I am so confused at this point. I am told that the "Big 3" treatment has many side affects and I am scared of the meds. I will check out the products you mentioned. Are they all over the counter? Doctor wants to send me to Shands Hospital in Gainesville, FL (this is a teaching hospital like Mayo) but I don't know if I want to go. Again thank you so much and God bless

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@nick52

@sounder27 i would like to share my experience with you. Just like you my specialist for infection didn’t want to give me any of the big 3 cocktail because of the severe side effects. In order to prevent being sicker I used alternatives medicine. I discover what is call Clear Lungs to keep my lungs clean of infections. I started taking Probiotic to clear the infection and used ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa) . You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. II am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. If you have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. Very interesting and it made a difference in my life. BUT THIS IS ME! I was diagnosed in 2010 with bronchiectasis after a severe pneumonia. MAC was discover few years later after a bronchoscopy. There is more alternative medicine outhere if you search for a solution. Good luck and keep searching for a solution. Do not hesitate if you have more questions. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

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Thanks so much for the info and kindness. I have been following the posts for a couple of weeks and I don’t feel so isolated. My cardiologist doesn’t recommend any herbal things and has made me stop taking some that had worked for me prior to my blood thinner and calcium channel blocker. I have recently reduced my work hours to part time. Again thank you all for sharing your journies with this disease.

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