(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

Hey everyone, just switched to a pulmo specializing in NTM’s who I found on the NTM info website. He stated unequivocally that sputum tests are less than accurate, and recommends a bronchoscopy, period. He said he would never do or rely on sputum sampling for a dx – an accurate dx…
Wanted you to know.

Liked by tdrell

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@kwilbur

I haven’t been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm – only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too – or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don’t know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don’t do any work once I am home – about 6 p.m. Today I pressure washed my house – well with a light weight Home Depot system and a hose – and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It’s not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

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kwilbur…why are you so hard on your body…6 hours of pressure washing??also….l think I recall that there is a scale used with lung nodules…”a Gleason scoring” that evaluates the size of lung nodules ” and the risk of being significant. ask a radiologist about it.UPDATE…CORRECTION….the name of the system /recommendations for evaluating pulmonary nodules is called is from the Fleischner Society….not the Gleason system as I said before. My apologies…tdrell

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Katemn…awesome awesome that you are stable!! thank you for sharing. A type of gift for the holidays!tdrell

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boomerexpert….awesome news….and bronchoscopy is not bad….especially if he/she does alot of them…keep us posted …good for you !!!tdrell

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Great news Katherine! I haven’t written in awhile so here goes. I left my pulm. Dr at Duke. You would think they would be good, right? It’s Duke! But, as we know there are many docs out there that just aren’t well informed and you have all educated me so well I can tell when someone knows what they are talking about. Met with new Dr. at UNC Center for Bronchiectasis Care where they treat not only bronch. but MAC as well (which I have). I have a mild case with only mild symptoms – no appetite, mild weight loss, mild fatigue (not sure if that’s the MAC or my lifestyle!). My doctor is holding off on drug treatment for now but I am using an Aerobika to help me break up some of the mucus and she said that can actually reduce the amount of MAC in my system. I have to go in every 3 months for lung function tests – if there’s a 10% decrease in my lung function we rethink the game plan. I also have a six month ct scan or chest xray. If it’s stable I can go yearly. I see her again next week but I think the appts with her do the same thing. 3mths, if stable go to 6 mths and then to a yearly. If I have a cold/respiratory issue I have to come in with a sputum sample which so far I haven’t been able to do. I don’t cough anything up – never have. So far I feel comfortable with her other than her saying that I’m contagious to people that are undergoing chemo. I know I asked you about that Katherine. That was in a writeup she gave me to read after my last appt. I’m going to ask her about that next week as I haven’t read that anywhere else. So, I’m very skeptical about that. Overall, I feel great. I wish I could send that healthy energy to those of you that struggle so much. Instead, I’m sending you good thoughts and wishes that you will have better days ahead. Janet

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@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

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Hello tdrell
The sputum culture showed MAC but the doctor asked her to do a CAT scan and re do the sputum culture one more time. He also asked her to keep taking the Symbicort Inhaler – this medication works like a magic, she stopped coughing since taking it.
God bless you.
nnassiri

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Thats fantastic news! Im still doing ok, still on the inhaled amakacin and will have a ct at six months on it which I think will be in Feb nxt year, and still on the big 3 also. Just bought a aerobika so am going to try that to get something up and out with that. Just a waiting game, I would like to hear how the trial is going with everybody else but havnt heard yet.
Hope everyone is doing well and thanks for asking. Heather

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I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

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@imeehaigt

I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

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Hi imeehaigt, welcome! I’m glad you find this forum. not many Dr. knows about MAC. Do you in states or Philippines? My own family Dr. don’t know anything about NTM ha said I know more about the MAC than he does now. You can read all the post and hopefully will help you.

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@tdrell

boomerexpert….awesome news….and bronchoscopy is not bad….especially if he/she does alot of them…keep us posted …good for you !!!tdrell

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Hi tdrell, I need a favor. When you go to NJH can you ask the Dr. if the water coming from the fridge which has filter then boil it before I drink is safe for bacteria. I stop taking showers I take a bath now. Thanks for your time. Cila

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@imeehaigt

I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.

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Hi@acila I live here in the philippines and gratefull that I found this forum. Information here in forum is really helpfull its nice to talk to people who undertstand what your talking and what you are going through. Ive been very diligent in going to the doctor do all the lab test needed. Im gratefull for having a medical insurance its a big help for me. I am also happy that I am single thats why I am able to afford my medication Im not a burden to any of my family member. Ive been going through this battle since 2009 and was only diagnosed of ntm 2014. I live a normal life everyday I still feel very strong physically and emotionally. PRAYING for another miracle that result of my culture test is negative I will get the result befor Christmas day. Hugs and prayers to everyone

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Hi, @imeehaigt. Welcome to Connect!
Some members here in Mayo Connect are also from overseas, and we appreciate your comment.
I am very happy to hear that you have been feeling strong physically and emotionally.
It seems this medical condition is fairly complex and hard to diagnose.
Thank you again for sharing your experience with others.

Liked by tdrell, imeehaigt

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Hello All! Sorry not to get back to you after requesting updates after worrying what was going on with everyone! BUT I have been out of town attending my grandson’s FINAL senior college football game! They lost .. but it was a hard fought game and we are proud of him. Frankly his mom is ready to have her life back after 9 years of EVERY Saturday fall football games with two boys .. but it has been a fun 9 years .. an end of an era. But I usually don’t take so long to answer so wanted you to know I didn’t fall the face of the earth! Hugs! Katherine

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@katemn

Dear All!
@apportee, @cila .. Cila, @cathyt .. Cathy, @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @josephene .. Jo, @katiemknor .. Winnie, @kaystrand .. kay S., @kwilbur .. Kathryn, @laneyk .. Elaine, @liliane .. Liliane, @lynnettehuler .. Lynn, @melissa23 .. Melissa, @mimi68 ..Linda, @Paula_MAC2007 .. Paula, @reneeg .. Renee, @rosemarya .. Rosemary, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa .. and anyone else I might have forgotten the address for!

I was thinking .. I let you all know the good news that I am still stable since seeing Dr. Aksamit Wednesday at Mayo Clinic .. YEAH! Now stable since May 2014. It made me wonder how all you are doing .. have not heard from some of you and have been wondering! Would you mind just a short note checking in to let me know your status? I know the Thanksgiving Holiday is coming up and we are all busy .. but truthfully it made me think of you all. No rush .. I will be traveling to see family .. but will enjoy reading your posts and answering as I can .. AND everyone else will enjoy catching up with you also! So Happy Thanksgiving to everyone if I don’t get a chance to say it before the actual day! Hugs to all! Katherine

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Hello Rosie, thank you so much for the update! SO glad you got into see Dr. Aksamit! You can TOTALLY trust him! He puts ALL your symptoms together .. the CT scan .. the Bronchoscopy results .. the answers to the question he asks you .. ALL these things to then decide IF you need to go on the antibiotic treatment.

If you have read my recent posts you will see that I just saw Dr. Aksamit .. that YES I DO have mycobacterium in my lungs .. BUT based on all those above things I just mentioned .. he said he considers me STILL STABLE! That I am to come back for a check up in six months. I absolutely KNOW that when you see him in December ( I hope you already have your appointment set up .. he is hard to get into and appointments can only be set up 3 months in advance!) .. but when you do see him .. he WILL put the puzzle together and come up with the appropriate answer for you! SO glad you are with him! and happy you checked in! Let us know how things are after your appointment! Happy Holidays and sending you a Hug! Katherine

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@imeehaigt

Glad to hear your ok katherine and happy thanksgiving to all. I will let you know as soon as I get the result of my culture test. I hope that the result is negative since I no longer want to take antibiotics since Im afraid of the side effects. As of now I still have excessive mucus usually early morning.Whenever I felt that I have excessive phleghm I go to the bathroom and expel the phlegm and I never had difficulty doing this it comes out easily and after doing this usually I dont cough the whole day. Im soo happy to find this forum I am a filipina and looks like no one here knows NTM. I did through researh about the disease so I can explain it to my friends and relatives. Im glad despite this illness im able to function normally so im still gratefull. MY HUGS AND KISSES TO ALL

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Hello imee! About the morning mucus .. BE SURE to do a GOOD job of coughing it up! Ask your doctor about an inhaler if you have ANY issues with bronchial tubes or breathing. Personally twice a day I take 2 puffs each of: Qvar and Atrovent. There are MANY inhalers .. it is just that those two do not trigger migraines for me.

For me .. 1st thing in the morning I use both inhalers. That ALWAYS makes me cough BIG TIME. GREAT as far as I am concerned. WHY? Because I call that two times a day (after using the inhalers) .. my “Lung Hygiene”! WHY? Because that mucus is a breeding ground for more mycobacterium to grow. The more you cough it up the better .. so cough as hard as you can and get up as much as you can .. consider it a positive thing!

Don’t be afraid of the side effects .. consider the antibiotics as your friend .. killing off those critters .. the mycobacterium! Remember positive thinking helps heal your body!

Because of being Filipina and not feeling people are not knowledgeable about NTM .. that means YOU must do your ‘Due Diligence” and educate YOURSELF to the best of your abilities! I strongly suggest that as you have time you read over:
an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I’d had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don’t let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
and
GOOD INFO: http://maclungdisease.org/frequently-asked-questions

Imee, SO glad you have such a great attitude and great spirit .. that will take you a long way on this journey of our disease! Just let us know how that culture comes out .. but if not what you want .. remember “Put your energy into what you can control .. and let go of what you CAN’T control”. Just keep trucking along like you are doing .. keep positive .. keep happy .. stay grateful! Sending you a Hug! Katherine

Liked by imeehaigt

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