(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

@boomerexpert

@windwalker @jentaylor – I agree that stem cell therapy for most conditions is not FDA approved nor proven to work…at best some folks get some relief hit/miss…the reason it’s out of pocket & not covered by insurance

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Honestly, I do not know what point they are at presently, but my doctor was very optimistic. They broke ground on the new facility in Florida last year that will specialize in this. There may be something written about it on their site; will have to look. I find it interesting and exciting.

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@colleenyoung

Dear all,
Please see this tribute to Katherine and post your thoughts here: https://connect.mayoclinic.org/discussion/remembering-katemn-losing-a-virtual-friend-hurts-too/

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Someone once asked me “Would you rather be hit by a truck or the shadow of the truck?” I was a little confused until I realized the reference was to the 23rd Psalm and walking through the the valley of the “shadow” of death and fearing no evil. Yes- far better to be run over by the shadow!! I think Katherine was pretty fearless and definitely not confused and “traveling” to her next life was probably met with sadness for the family left behind but perhaps with welcome anticipation of seeing missed loved ones. In spite of the pain and daily “aggravation” of this disease, I think Katherine was a pretty gutsy lady who in giving so much of herself, her knowledge, and her passionate suggestions about how to deal with this disease, to us on this forum, she was, hopefully, blessed right back! Maybe all of her posts could be published somehow and the proceeds go to research. Thank you Katherine!

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@colleenyoung

Dear all,
Please see this tribute to Katherine and post your thoughts here: https://connect.mayoclinic.org/discussion/remembering-katemn-losing-a-virtual-friend-hurts-too/

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Is MAC and bronchiectasis what actually took her life? I thought perhaps — while chronic — that Mayo’s could possibly contain it so that it would not be a disease that was fatal. Guess I have much to learn. She sounded good each time I read one of her posts and I thought it was being controlled.

Liked by Kay Strand

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@cbest, Hello cbest! Do you have a first name? Your post was the one bright spot in my day today. Your bit of good news was uplifting. I am so glad that you are experiencing so much improvement. Please keep us posted on how you are doing.

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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@cathyt, Hello Cathy. I became the new mentor to this group recently; Katherine thought I’d be a good one. Will give it my best. I have been reading past older posts and noticed you have not posted in awhile and was wondering how you are doing? We care about our members; past and present. I look forward to hearing from you. – Terri

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@heathert

Hi all, its winter here and I have been in contact with someone with Respiratory syncytial virus(RSV) which is prevalent here at the moment, moreso than the flu, I think I read that some people with bronch have antibiotics on hand in case anything goes to their chest. Is this correct and what antibiotics do you have for this, is it just the norm amoxicillan? Any other advice would be greatly appreciated. Next time I hear coughing I will be running!

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Heather
Last winter my doc at Mayo gave me Doxycycline to take on top of the big 3 in case I got a virus. This was to prevent eventual pneumonia I always get. I did get very sick with a fever and resp symptoms and took them. I got a sinus and bronch infection but no pneumonia. She thought since it was Maybit was RSV perhaps that started it all.
Now she gives me a script of it I keep on hand in case I get another flu bug. Of course flu or RSV can’t be cured with antibiotics but it can take care of residual bacterial infections like sinuscwe getvfrom the flu. I think it’s a good idea and so does doc, to keep them on hand.
Kay S

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@heathert

Hi all, its winter here and I have been in contact with someone with Respiratory syncytial virus(RSV) which is prevalent here at the moment, moreso than the flu, I think I read that some people with bronch have antibiotics on hand in case anything goes to their chest. Is this correct and what antibiotics do you have for this, is it just the norm amoxicillan? Any other advice would be greatly appreciated. Next time I hear coughing I will be running!

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That’s probably a good idea because doxy is helpful for bronchiectasis. Smart doc!

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Do any of you on the “big 3” have a preferred probiotic that you take to in conjunction with the antibiotics?

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@laural856, Hello Laura! I see that you are a ‘newbie’ on our forum. Welcome aboard! Other members may jump in with recommendations, but recently, I saw where someone really liked a brand called ‘Renew Life’ probiotics. It has 30 billion live cultures. Be sure to space your probiotics two hours apart from the time you take your antibiotics. That way they are not battling each other, and it gives the probiotics time to multiply and get situated. So glad you found us!

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@laural856

Do any of you on the “big 3” have a preferred probiotic that you take to in conjunction with the antibiotics?

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IMD complete probiotics on Amazon is a tad pricey but good.

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@windwalker

@laural856, Hello Laura! I see that you are a ‘newbie’ on our forum. Welcome aboard! Other members may jump in with recommendations, but recently, I saw where someone really liked a brand called ‘Renew Life’ probiotics. It has 30 billion live cultures. Be sure to space your probiotics two hours apart from the time you take your antibiotics. That way they are not battling each other, and it gives the probiotics time to multiply and get situated. So glad you found us!

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That’s a good one too.

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@laural856. I’ve been taking Jarro-Dophilus EPS as recommended by Dr. Huitt at NJH. I take 2 in the am and 2 at dinner. They are room temp stable and have 5 billion per capsule. They also have a coating that is suppose to make the capsule get past the stomach and into the intestinal tract. So far they have been doing the trick but I’ve only been on the antibiotics for 2 months. Jan

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@heathert

Hi all, its winter here and I have been in contact with someone with Respiratory syncytial virus(RSV) which is prevalent here at the moment, moreso than the flu, I think I read that some people with bronch have antibiotics on hand in case anything goes to their chest. Is this correct and what antibiotics do you have for this, is it just the norm amoxicillan? Any other advice would be greatly appreciated. Next time I hear coughing I will be running!

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Thanks Kay sounds good. I will go and get a script.

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@irene5, Thank you, Irene. I have added that to my probiotic list.

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