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.

heathert | @heathert | Aug 26, 2016

Hi Katherine was just wondering if you had to stop the amakacin on the days you did the sputum samples? I have to but know another lady who isnt, just want to make sure its correct.

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Katherine, Alumni Mentor | @katemn | Aug 26, 2016

Hi Heathert, Nope I was NEVER told anything like stopping the Amikacin on days I sent in the sputum samples. Never came up. In thirty months I'm SURE if it had shown up in the report results or been a problems .. I feel confident I would have been told about it! This was just MY journey! Keep it simple is my key! Katherine

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Katherine, Alumni Mentor | @katemn | Aug 26, 2016
In reply to @kwilbur "Winnie, it is nice to hear from another teacher. I, too, have bronchiectasis and have had..." + (show)
@kwilbur

Winnie, it is nice to hear from another teacher. I, too, have bronchiectasis and have had that for two years. As teachers, our constant talking can make our symptoms act up during the day. I carry a handkerchief in my purse and use it discreetly. I have never been questioned by students or any other person at school for that matter. I just have to cough out phlegm at random times during the day. I may have MAC - I had "evidence" of MAC in my last chest scan - but I have yet to find out what is going on for sure. I, too, suffer from anxiety. Seems to go with the territory doesn't it?

So do what Katherine has suggested and enjoy each day. This is a wonderful forum and you will get answers here..

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Kathryn, thank you SO much for jumping in to support Winnie! It helps so much for all of us to share our various journeys .. especially since you are a teacher .. of all people you can relate! All we have to do is just be one step ahead of a new person to be able to share what we know at this point in our journey. We can ONLY share our own journey .. we don't have to be doctors .. or experts .. or anything else .. that would be wrong to pretend to be .. we can only be here to support each other and share our own journeys. Thank you again for sharing yours .. you have helped another person on their first scary step .. for it NOT to be quite so scary! Hugs and a salute to you! Katherine

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Katherine, Alumni Mentor | @katemn | Aug 26, 2016

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
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@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

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5 replies
Katherine, Alumni Mentor | @katemn | Aug 26, 2016

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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7 replies
Kathryn S Wilbur | @kwilbur | Aug 26, 2016

We are there for you. Thank you for being here for us. Kathryn

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Katherine, Alumni Mentor | @katemn | Aug 26, 2016

@katiemknor .. Winnie!! I just thought of some GREAT advice I remembered posted by our member Liliane .. I am copying it below!! Look at her advice to request a BRONCHOSCOPY .. that might give you a quicker opinion?? Not sure .. but might be an option for the second opinion?? Just wondering .. been scratching my head for you!! Hugs to you! Katherine p.s reading the past post may give you other ideas!!
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Posted by @liliane, Thu, Aug 18 at 12:12pm CDT

Hello Kathryn!
I am glad you have joined this very supportive forum. You say that your pulmonary scans show evidence of a possible MAC/MAI infection. There is a protocol followed by pulmonologists in order to properly diagnose and treat this disease.
My suggestion for you is to request a bronchoscopy, followed by a bacterial culture of the fluids and, if positive for Mycobacterium avium, an antibiotic sensitivity test in order to determine which drugs will be effective in your case.
I am a 59 year old dentist, with a background in microbiology, and I have been diagnosed with MAC/MAI earlier this year. I am on my fourth month taking the three recommended antibiotics, Rifampin, Clarithromycin and Ethambutol. I have noticed a decline in energy since starting my therapy. I still manage to workout daily and carry on my normal activities. You are not alone in this struggle.Here you will find good suggestions on how to best tolerate your prescribed medications and how to be a good, well informed self advocate. Best wishes to you in your journey. There is light at the end of the tunnel.
Liliane

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2 replies
Katherine, Alumni Mentor | @katemn | Aug 26, 2016
In reply to @jillnc "Still have fevers and night sweats.  My iron was low, reg dr suggested over the counter..." + (show)
@jillnc

Still have fevers and night sweats.  My iron was low, reg dr suggested over the counter iron pill.  Tiredness hasn't been as bad since I started taking that.  I have a cough twice a day it seems, but my 4yr old and husband do too, so think we all have something.  I've had a hoarse voice for months so going to ent about that Friday.  I've never had any trouble sleeping at night and my cough has gotten better over time.  Just wish fevers and voice would straighten up.  I see my ID dr next week and waiting for lung dr to tell me results of ct and next step from his side.  My upper arms hurt and RA dr took xray and I have a calcium deposit on my tendon but she wants okay frim ID dr to inject cortisone in my shoulder.Still plugging along but at least making some progress...though I wish it was faster.<br><br><br>

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Hi jillnc, haven't heard from you in a while .. wondering how you are doing? Ok we hope! Sending you a hug! Katherine

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Katherine, Alumni Mentor | @katemn | Aug 26, 2016
In reply to @laneyk "I was diagnosed with MAC in May of 2015. From reading other posts, I did not..." + (show)
@laneyk

I was diagnosed with MAC in May of 2015. From reading other posts, I did not have the same symptoms as others did. I had been feeling really bad for several months. Coughing was not a problem, although my husband said I coughed a great deal during the night. I was having night sweats and they were increasing and would wake up with headache around sinus area. Finally went to Dr. Since nothing else contributory he treated me for sinus infection.. Returned next week or two when that did not help. Did sinus x-rays. Negative. One week later began running fever and feeling worse. Went back to doctor and white count elevated. To determine cause of elevated white count did chest x-Ray was done showing an apple sized area of infection. Sent to hospital for IV antibiotics. Referred to pulmonologist. TB ruled out after week in isolation. No resolution from IV antibiotic after 10 days. PICC line put in and sent home to continue IV therapy. Oxygen used around the clock. Saw doctor for the next 6 weeks with no improvement. On the last day I saw this particular Doctor he accidentally saw the culture report from when I was in the hospital and mentioned it too me. I don't know why but he did not start MAC treatment. I googled MAC and when i I saw the recommended treatment and knew that I had not been on any of the recommended meds, I saw my primary dr and requested he may new referral. MAC treatment was started and the first month there was remarkably improvement on chest x-Ray which continued for several months. Negative sputum for MAC after 3 months. My chest x-Ray will always have scarring. I have been on the 3 antibiotics now for 13 months everyday. Soon to end. I have not felt that great, but I have not felt as bad as I was afraid I might. I just keep going and try to make the best of it. After about 6 months I was able to get off the oxygen and resumed an almost normal life. I just pace myself and am grateful that this disease is curable. I hope this will encourage someone else. Do the treatment. I failed to mention that I lost a lot of weight as I had no appetite at the beginning. Appetite returned somewhat and have regained a little weight. During all of this, 4 days out of the hospital, my husband passed away unexpectedly. It's been a hard year and a half. Expecting better times soon.

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@laneyk Elaine, we have not heard from you .. wondering how you are doing? Hope you are ok. I know it has been rough. Know that we are here if you care to return. Hugs! Katherine

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katiemknor | @katiemknor | Aug 27, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

Jump to this post

Thank you Katherine for encouraging me to post and everyone else for reaching out to me. I was moved by Katherine's concern that someone will feel afraid and alone during her absence.....what a beautiful person. I feel grateful to have found this group. I plan to listen to Katherine's advice and put my energy into what I can control and let go of the rest. Yesterday during a walk I thought about the damage stress does to our health and not to mention our relationships. At the moment it's all about "operation stress management" and being kind to myself. I am blessed to have beautiful people in my life.
Katherine I hope you've a great vacation! Winnie

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