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!

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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:
- 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.

jentaylor | @jentaylor | Aug 6, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

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@lindham272 Thanks, Linda! I really appreciate the information! I&apos;ll keep you guys posted if I look into it anymore! ~Jen 🙂

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2017
In reply to @colleenyoung "Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking..." + (show)
@colleenyoung

Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with me and continue to echo throughout Connect. Now Katherine (@katemn) is practising what she preaches — knowledge is also knowing when it is time to take care of oneself.
Thank you from a community you helped make strong.
Always grateful
Colleen

Jump to this post

Jen, I asked my doctor at Mayo about stem cell therapy. He said it is a waste of money right now, and that there is no scientific proof yet that it works. He said it is still very much still in the experimental phase and he hopes to see it work in his lifetime.

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boomerexpert | @boomerexpert | Aug 7, 2017

@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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3 replies
jentaylor | @jentaylor | Aug 7, 2017

Very good points that I hadn't thought of...

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cbest | @cbest | Aug 7, 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 am a Respiratory Therapist and asthma educator for 45 yrs. for over a year I was treated for asthma and bronchitis until just before Thanksgiving last year I started coughing up blood just before I left work. Scared me and everyone at the hospital to death. Found bilateral upper lobe pneumonia by January 2017 had a bronk. And it came back with MAC. I honestly knew nothing of this illness and had never knew a patient of mine diagnosed with it. I did bronks and pft also for years and never crossed its path. No one at all 3 hospitals and RT departments knew of it either. I am surprised at how many health care workers I see on here. I have learned a lot. I think this is missed a lot.
At one time I was IGM deficient but it is normal now. Was on dyoxcyline for 2 weeks after my bronk and that seemed to clear my chest and I quit coughing. Now Have been on the three meds for 9 weeks. And even my pft has improved almost back to pre MAC and I am not spa any more. Had a chest x ray today it is clear and I see infectious dr tomorrow. Hope this is going in a good direction

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cbest | @cbest | Aug 7, 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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Soa not spa

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tdrell | @tdrell | Aug 7, 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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Cbest....wow....what a lot has happened to you in a short time period!!!! Please ....do not allow yourself to be put on the big "3" Antibiotics til you have had a Cat scan of chest and are seen by a DR who specializes in NTM infections.where do you live?
Tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017

Hello Cbest, do you have a first name? Thank you for joining our converations. I too have noticed that many of the people on our forum have been long standing health care workers. I am keeping a poll for research purposes. I have also noticed that many of here are were educators as well. I think we can all relate to the fear after being diagnosed with MAC. The key is to learn ALL that you can about it and keep learning. Knowledge is power! Also, it sounds like you have caught this early. Knowing how to take care of yourself with this disease will help you to maintain your health and keep your lung function up. You did not mention having bronchiecstasis, you may want to ask your dr about that. I hope you check back in with us and let us know how your I.D. visit went. We will be thinking of you today. - Terri M.

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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

Jump to this post

I have had 3 cts over the course of 3 months so far all with bilateral upper lobe pneumonia and multiple nodules I am seeing an ID dr and pulmonolgist both. Had a bronk that cultured MAC. And sensitivities were done. I was so soa that my chest hurt when I walked. My pft fvc had decreased from 80 to 57. I am on biaxan, Ethambutol and riframpam for the past 9 weeks. Doing good so far on them. There was one Med I could not take. So ID dr recorded on this combination . I am better and pfts improved back to 75-77% range. Chest x ray yesterday read clear and in 2 weeks will have another Ct. I no longer have a cough or congestion

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

Jump to this post

True. The good news is that present research at Mayo is being done with taking T-cells from the lung and adding them to cleaned up donor lungs to make them less likely to reject.

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