(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

@joanney

Hi Kate and others. I have not posted in a long time. I do however follow all the posts daily and have learned so much. I have had Bronchiectasis and MAC for about 5 years now, but still have not been on antibiotics. I had a Left lower lobectomy in 2002 for a Carcinoid tumour in my lung, and then became ill in 2007, with CT showing multiple tree in bud clusters in lungs, and one slightly bigger nodule. My Oncologist without having done a biopsy of nodule because of it’s small size and scar tissue, has thought it was the carcinoid back again, so has been treating me with monthly injections of Sandostatin, (known to slow growth and minimize symptoms) I also have had terrible arthritis through all this, I have had 2 shoulder replacements and most recently a knee replacement. I am 66 yrs old and still have such a zest for life. I have always been very athletic, loving biking, skiing, Kayaking, so all of these setbacks have dragged me down at times. This summer I decided I would tape up my arthritic knees and get back on my bike, to get my lungs in shape for the surgery. I even went biking the day before surgery, got the knee really sore, but lungs felt great, better than they had in years, I even managed up quite a steep hill.
Now I am almost 3 months into my knee recovery, it’s really snowy and cold outside, at times too cold for my reactive airways, but I cannot wait, till the snow melts and I can get back on the bike, and get that fresh air moving in and out of these lungs. My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year, my sputums have been positive for maic, when I have been able to get a good specimen up. Other than that, I will carry on with Ventolin puffer 3x a day, Alvesco puffer in evening, Airobika, chest physio, and excercise and hope I can stay stable for as long as possible without doing the big 3.
Thank you so much all of you for all your input, my heart goes out to all of you incredible strong people who are going through so much, with coping and living with these diseases.
Hugs to all from Canada.

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Hi @joanney. You can go here http://mayocl.in/2cK4PdN to see the conversation of the Carcinoid group where you can meet the people @hopeful33520 has mentioned.

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@katemn

Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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Katherine – I just went to order the mini-mate air purifier at amazon, but I find there are several options… can you tell me which one you have? I am ready to go with my cart filling up with Halo, Airborne, and I will add the purifier once I hear from you. All of this SO helpful – thank you! Pam

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@katemn

Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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Pam, Here is the link for the one I ordered. I think it’s the same as the one Katherine got but I’m not sure. I love mine though if that’s any help. https://smile.amazon.com/gp/product/B00GXOK86I/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
I also got the rechargeable batteries that they recommend with it. Linda

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@katemn

Posted by @pfists, 10 hours ago
Do you use water in the diffuser with the oils
I heard that tap water wasn’t safe to put in humidifier/diffuse so wondered if you need to use water with the oil.
I use thieves oil also on bottoms of my feet.
Thanks
Shari

@pfists, Shari, personally I would use distilled water. Research has not ruled out mycobacterium NOT being breathed into our lungs from water .. like from hot tubs. Best to be safe! Hope this helps. Hugs! Katherine

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thank you so much!  Pam   

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Posted by @dianelobosco, 13 hours ago
I went and saw my pulmonary dr 1/3/2017. He discussed whatvwas fkund and told me that i would get a referall ti an infectuous disease dr. He precribed azithromycin and got me started on it. I just saw the infectious disease dr on 1/11/2017. She took me off of the azithromycin, and said ti wait till we know what antibiotics will work for me. She said it can take upnto 6 weeks. My next appt at this rime in 3/12/2017. Unless she gets the report sooner. I am worried that I will cause damage to my lungs. Ibwant to gwt started and hopefully beat this.

@dianelobosco Diane, I hope you don’t mind but I am going to answer you on our wonderfully supportive MAC Forum . I think you will find really GREAT information if you read the past pages of this Forum .. plus meet some lovely people who will walk with you every step of our shared MAC journey.

Diane, do NOT be afraid .. if you do read the past pages of the Forum .. you will find probably the reason your Infectious Disease doctor is waiting for your treatment is BECAUSE she is smart enough to have ordered what is recommended per the below .. so you should ACTUALLY be reassured!

‘ Make sure your Pulmonologist is doing a ‘susceptibility panel’ IN ADVANCE of going on the antibiotic to tell EXACTLY what your MAC will respond to and WHICH of one of the few drugs that will work that particular mycobacterium. This panel is done from a positive sputum culture or lavage of lung. Susceptibility testing is often ordered at the same time as a culture.
Susceptibility Testing for Mycobacteria
http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805
http://cid.oxfordjournals.org/content/31/5/1209.full
http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

Diane, it sounds like you are in good hands with this doctor .. educate yourself to our shared disease through reading the pages of our Forum .. THAT will help greatly in lessening your fears .. you will find SUCH GREAT help .. support .. knowledge .. tips. Just know that we are here for you. After reading .. feel free to ask any questions or whatever. We are here! Sending you a hug in this tough time! Katherine

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@katemn

Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was shallow upper breathing!  I plan to make a note and place it where I will see it .. THEN do it several x a day! Hope you find it helpful!

Belly Breathing Helps to Strengthen Lungs
https://bronchiectasisnewstoday.com/social-clips/2016/11/16/ten-key-facts-about-bronchiectasis/

3 IN .. 3 HOLD .. 4 BREATHE OUT

2 MIN. SEVERAL X PER DAY

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Hugs,
   Katherine

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Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it’s obvious to others that I’m constantly clearing my throat coughing occasionally. I’m extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

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Posted by @melrosedecosmo, 9 hours ago
Hi Justin, thanks for bringing my post back into the picture. I think it’s an important one (obviously ;-), to research. I say this because I use steam cleaners in my home to kill viruses and germs with the goal of minimizing me getting sick. Also, I have eliminated most cleaning chemicals from my cleaning to reduce lung irritations. I made a call to the NTM website education department and had to leave a message. I will call them again on Monday and hopefully get through and will report their feedback.

Rosie, hope you don’t mind if I answer on our main MAC Forum .. this is where I found the below info on steam cleaning .. hope it helps you! PLEASE share with us any information you get from NTM on this subject. We certainly want to do our due diligence .. but without going overboard. We have some very ill people on our Forum who just may not have the energy to all that is encouraged .. but at least we can let them know. Hugs! Katherine

Past Info on our Forum:
In terms of steam cleaning .. I also needed to have someone else clean house for me .. the various chemicals REALLY trigger my coughing .. even cough after she is gone until my air cleaners clean up my air! For me .. we downsized to a condo where we were unable to install wood flooring which would have been ideal. So researched and found a Berber type carpet that was based on recycled plastic bottles .. that could be steam cleaned every 2-3 weeks. Also invested in a VERY good HEPA vacuum cleaner .. have done everything I could think of being diligent because I also have ‘Reactive Airway Disease” .. react to MANY things .. cough like crazy!
*another poster said: I steam clean my floors weekly

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@bruce668

I finially got a call from mission infectious disease in asheville nc today and i have an appointment this thrusday evening. I sure hope they treat me better with mai than asheville pulmonary did my wife , they act like its nothing to worry about .

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Hi @bruce668 , hope you are both doing ok,how did you get on at the infectious disease doctor?

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@gggolfs

Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it’s obvious to others that I’m constantly clearing my throat coughing occasionally. I’m extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

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Welcome, @gggolfs. I moved your message to the main discussion thread in the MAC group. Your fear of the MAC protocol will be familiar to many members sharing on this forum. I encourage you to read through the past messages to learn more. I’m confident other members, like @tdrell @kaystrand @cila @128128terry11t @Paula_MAC2007 @irene5, and of course @katemn, will chime in to share their experiences with treatment and living an active lifestyle.

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Heres an article I just found, interesting, have a look. https://www.ncbi.nlm.nih.gov/pubmed/26513209

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@gggolfs

Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it’s obvious to others that I’m constantly clearing my throat coughing occasionally. I’m extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

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Dear @gggolfs, (do you have a first name .. so much more personal) .. so glad you found our Forum! It sounds like you are really going through a tough time! A lot to go through! I was diagnosed in 2007 and unfortunately due to lack of knowledge and information that can be found on this wonderful Forum I .. like you .. did not go on the antibiotic treatment until October 2011. I refused to go on the antibiotic treatment until I was diagnosed with a SECOND very serious mycobacterium .. MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES in 2011 when I absolutely NEEDED to go on the antibiotics to get rid of the now TWO mycobacteriums .. including the serious Abscesses second mycobacterium! I then in 2011 was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to my previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I can only speak for myself .. but my “bloody cough” is a result of a second issue .. Bronchiectasis. As you read through the pages of our Forum you will find that it is common for Bronchiectasis and MAC to go ‘hand in hand’ .. kind of a chicken/egg thing. In our shared journey in these helpful pages you will find hints and wonderful support! It is important that you seek out a GOOD Infectious Disease doctor who is knowledgeable about MAC .. your constant clearing of your throat could be a sinus issue .. I know I use daily a Mayo Clinic prescription spray .. we MAC patients frequently have Gerds. ONLY a good Infectious Disease doctor will be able to put all these pieces together .. a MAC puzzle and give you good answers. BUT trust me .. THERE is NO worry about ‘life expecancy’ .. get that out of your mind!! If you get your act together .. read these pages .. educate yourself .. do your ‘due diligence’ .. act as your OWN best advocate .. life expectancy just will NOT be an issue! Since I went off the antibiotic treatment in May 2014 I have traveled all over the world .. had a ton of fun .. life is full and couldn’t be better! Get your fanny in gear Girl! We are here for you!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

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Interesting indeed, thanks.
Yay…research…

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@boomerexpert

Interesting indeed, thanks.
Yay…research…

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@boomerexpert unfortunatly not for gram negitive, we need gram negitive drugs now! but yes yay research!

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@gggolfs

Diagnosed 6 months ago. Have occasional bouts of bloody cough. Do not have a chronic cough that keeps me up at night but it’s obvious to others that I’m constantly clearing my throat coughing occasionally. I’m extremely fearful to go on the protocol & do not want my life to change completely. I live a fairly active life busy entertaining , playing golf and working as a hairstylist in my own business. What is the life expectancy from time of diagnosis with and without treatment?

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My first name is GG

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