1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

cbest | @cbest | Aug 8, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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I live in bowling green ky and know there is a Mac clinic at vandy in Nashville if I need it

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tdrell | @tdrell | Aug 8, 2017
In reply to @boomerexpert "@windwalker @jentaylor - I agree that stem cell therapy for most conditions is not FDA approved..." + (show)
@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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Windwalker terri.....is it at the point where they are doing on humans??tdrell terri

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heathert | @heathert | Aug 8, 2017

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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4 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 9, 2017
In reply to @heathert "Hi all, its winter here and I have been in contact with someone with Respiratory syncytial..." + (show)
@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!

Jump to this post

Hello Heather! All of my doctors over the last 10 yrs have all agreed for me to have an antibiotic prescription on hand in the event of a lung infection coming on. No one knows our bodies better than us. It is up to the dr to decide which one is good to have on hand.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 9, 2017
In reply to @boomerexpert "@windwalker @jentaylor - I agree that stem cell therapy for most conditions is not FDA approved..." + (show)
@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

Jump to this post

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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irene5 Irene Estes | @irene5 | Aug 11, 2017
In reply to @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/" + (show)
@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!

REPLY
auntnanny | @auntnanny | Aug 11, 2017
In reply to @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/" + (show)
@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/

Jump to this post

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.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 12, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

Jump to this post

@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.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 12, 2017
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@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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