(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

@jkiemen

@brigby I swear the sinus tract is where it seems to hide out for me. It seems I always have post nasal symptoms

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I’ve had sinus trouble all my life. Now they’re trying to keep the m. Abscessus from getting to my lungs. FYI Gentamicin + Budesonide for my sinuses seems to help keep my lungs lungs clear. After years of Neti pot I bought a Navage and I really like it.

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@boomerexpert

@windwalker @alleycatkate licorice root, or more specifically Deglycyrrhizinated Licorice (DGL) Root (I use Enzymatic Therapy brand and get via Amazon) are designed for stomach relief and wo/raising blood pressure. I've been using it regularly and have experienced a distinct reduction in my throat clearing and mucus production that I now know was coming from my stomach. Hope this helps.

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Hello Terri – this is Pam … I sent an email to the group a few days ago about my use of Levaquin – and had some questions – I can not see that it got posted. Do you know if it did? Thanks so much, Pam

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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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My brother lived 10 years after his lung transplant from 2005 to 2015. His body was rejecting the lungs so they couldn’t do anything for him. He fought hard but lost the battle. He was 60 years old. At least he had 10 more years with his grand kids. Nick

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@brigby

Hello Girls, I am new to your forum. I am a 56 year old diagnosed with Bronchiectatasis and MAC avium 2 years ago. I also have NTM abscessus colonization in my sinuses (along with a host of other bad dudes!) I see doctors at Stanford and they have things contained pretty well right now by Gentamicin inhalant 2x daily and budesonide inhalant 2x daily, along with compression vest, postural drainage, and nebulizer w/2% saline. I am still able to work full time, enjoy grandbabies, and most weeks, exercise 5 days a week. But I do suffer with exhaustion, nearly constant headaches, and when I get tired, terrible stabbing muscle pains & chills. Seem to need 10-12 hours of sleep a night. Prayers of friends and family keep me going, but I am concerned about what the future holds. I do wonder sometimes if I should stop working to reduce stress and focus all my efforts toward staying well (?) Also wonder if I should explore National Jewish or Mayo? My lung doctor has explained the "Big 3" antibiotic treatment plan and when we would consider starting. I am also wondering which of my symptoms CBD oil might help? Thanks for listening and any response is appreciated. So grateful for this forum where we can lift one another up and encourage others!

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Hello. @brigby how did they find the MAC in your sinuses? I have only heard about one other case of it being there. You take care! (Irene)

Liked by Brenda R.

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@brigby

Hello Girls, I am new to your forum. I am a 56 year old diagnosed with Bronchiectatasis and MAC avium 2 years ago. I also have NTM abscessus colonization in my sinuses (along with a host of other bad dudes!) I see doctors at Stanford and they have things contained pretty well right now by Gentamicin inhalant 2x daily and budesonide inhalant 2x daily, along with compression vest, postural drainage, and nebulizer w/2% saline. I am still able to work full time, enjoy grandbabies, and most weeks, exercise 5 days a week. But I do suffer with exhaustion, nearly constant headaches, and when I get tired, terrible stabbing muscle pains & chills. Seem to need 10-12 hours of sleep a night. Prayers of friends and family keep me going, but I am concerned about what the future holds. I do wonder sometimes if I should stop working to reduce stress and focus all my efforts toward staying well (?) Also wonder if I should explore National Jewish or Mayo? My lung doctor has explained the "Big 3" antibiotic treatment plan and when we would consider starting. I am also wondering which of my symptoms CBD oil might help? Thanks for listening and any response is appreciated. So grateful for this forum where we can lift one another up and encourage others!

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@brigby absolutely. Always get second and even third opinions and options.

Liked by Brenda R.

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@brigby

Hello Girls, I am new to your forum. I am a 56 year old diagnosed with Bronchiectatasis and MAC avium 2 years ago. I also have NTM abscessus colonization in my sinuses (along with a host of other bad dudes!) I see doctors at Stanford and they have things contained pretty well right now by Gentamicin inhalant 2x daily and budesonide inhalant 2x daily, along with compression vest, postural drainage, and nebulizer w/2% saline. I am still able to work full time, enjoy grandbabies, and most weeks, exercise 5 days a week. But I do suffer with exhaustion, nearly constant headaches, and when I get tired, terrible stabbing muscle pains & chills. Seem to need 10-12 hours of sleep a night. Prayers of friends and family keep me going, but I am concerned about what the future holds. I do wonder sometimes if I should stop working to reduce stress and focus all my efforts toward staying well (?) Also wonder if I should explore National Jewish or Mayo? My lung doctor has explained the "Big 3" antibiotic treatment plan and when we would consider starting. I am also wondering which of my symptoms CBD oil might help? Thanks for listening and any response is appreciated. So grateful for this forum where we can lift one another up and encourage others!

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@irene5 LOL I’m even glad to hear of ONE other case of m. abscessus in sinuses! They have cultured it out now twice, at a 4+, at Stanford, though endoscopy.

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@jkiemen

@brigby I swear the sinus tract is where it seems to hide out for me. It seems I always have post nasal symptoms

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@brigby, I wonder if your action with neti pot and lavage has helped spare your lungs? I think most of us on here with mac also had years of post nasal drip. Hmmm, makes me wonder if this infection doesn't first start in the nasal passages.

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@brigby You are not using tap water in the neti-pot are you. Isn't Tap water possibly contaminated with MAC?

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@jkiemen

@brigby You are not using tap water in the neti-pot are you. Isn't Tap water possibly contaminated with MAC?

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@jkiemen I used tap water for years, unfortunately. The past 3 years I’ve used only distilled water. Thanks!

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@jkiemen

@brigby I swear the sinus tract is where it seems to hide out for me. It seems I always have post nasal symptoms

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Not I, Terri. Never any nasal problems.

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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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@nick52 ..I am so sorry for your loss of your brother. Kate

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@jkiemen

@brigby You are not using tap water in the neti-pot are you. Isn't Tap water possibly contaminated with MAC?

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@jkiemen @brigby tap is great if you get a whole house water filter of 0.2 microns as I did…a bit pricey but well worth it over time!

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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

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 So very sorry you are suffering. We understand!

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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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You have come to the right place. We may be at different stages, but we are all on this journey together. We understand the cost of this disease on our lives as we remember where we were before MAC! There is so much helpful info on this site from many informed individuals. You will be glad you came on board! We understand, and we continually help each other.

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