(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

@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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I believe you are suggesting Otezla. I tried this medication in Nov/Dec. I had to retreat because of tendonitis side affects. It is a slow process healing from the reaction to the onset of parthesis, neuropothy ,sticff neck, swollen joints and tendon pain.

I found there is a FDA black box warning on this new medicine in Australia for such reactions but not here in US. Ive strggled to find mire info about this.

I appreciate Sherri, mentioning this started with Humira, i also had my infections and lesion diagnosed after starting Humira. It seems my body likes “old school meds”. I remember working at NIH seeing patients on trials for Enbrel but i wasnt a candidate then so i know im too complicated now. I hear many are doing well on Otezla or Humira so dont want anyone to take my post personally, it can be a life saver for others!

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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I did look up and see minocycline is also used for psoriatic arthritis also.
I learned about it on another board its called:
“The Roadback Foundation”
Just google that and check it out
Its non immune suppressive medication!

Liked by jewel8888

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Thank you Shari,

Oops i mistyped your name when i mentioned you in a post to boomerexpert, Terri. Its hard with the fingers typing on my phone and spell checker not available here, lol. Like you my bacteria and fungal problems started in my lung when i started Humira. I go to the Dr in a few weeks so will be talking about the bad reaction i had to otezla and what we can do to minimize the bacteria infections etc. I would have tagged you in that message, could you tell me how?

Hoping your having a good day,
Julie

Liked by pfists

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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Hi Katherine. My name is Rosie but the system already had a number of Rosies as a username. Nope not from Melrose MN. I currently live in Vero Beach, Fl and getting ready to make a move to Columbia SC. I have read through most of the past posts and found them helpful. I am constantly on the search for new support groups as I find people who are dealing with the same issues help me feel I am not alone! I am a member of inspire and the folks in this forum are wonderful.I have battled with different illnesses throughout my 63 years. Am and always have been a non-smoker and took great care to stay away from second hand smoke. Except for stints of medical issues always kept myself healthy (exercise, ate very well, no sugars, refined starches, etc) So faced with these two diseases is a real challenge as I used to be a very active individual who now gets tired very easily and am working my way back to being able to walk a mile without running out of oxygen.

As I stated in my original post, I was diagnosed with these two diseases in July 2015. Eve my husband and I were scheduled to move to our new home, I got to spend the week in a hospital because I started coughing up a lot of blood. The hospital doctors said I had an unspecified pneumonia, sent me home the first night I went to emergency with an antibiotic. A day later, I was coughing more blood and clots, back to the hospital and this time I was placed in isolation because they thought I had TB. Infused with antibiotics 24/7 then a broncho, culture in the local lab showed nothing. Let out of the hospital in a week, kept getting worse and continued to lose a lot of weight. The sweats were horrible. Decided to be seen at the Mayo Clinic in Jacksonville. In the interim another pneumonia and blood coughing bout, more weight loss. Back to the hospital. Month later, the Mayo conducted another broncho and they grew the MAC and confirmed I had bronchiectasis. I had been battling with acid reflux and stomach issues for years. Another round of antibiotic two months apart. The second round of doxy burned my throat and my esophagus (have a motility issue so I have to take oral suspensions). It has been a nightmare. I landed in emergency three months ago with what seems to be ancillary issues related to the SIBO and fructose intolerance I now battle with due to the rounds of antibiotics I was on. Dr. Leventhal from the Mayo told me NOT to take any antibiotics without checking with him first because of possible future resistance issues. Luckily, I have been pneumonia free for 8 months now, still have the issue with not being able to gain weight (89lbs currently) and the stomach issues. I pretty much live in a cocoon at home, keep my home as germ free as possible, wear masks in public and steam clean my floors weekly. I had to hire a cleaning service to take care of my home because I just didn’t have the endurance or strength to do the work myself. My lung capacity has dimensioned based on the PFT tests and legally I qualify for disability (which I am having a difficult time accepting this). Dr. Leventhal told me the antibiotic regime would do me more home than good right now. Since the changes in the MAC growth are small he wants to wait. Prescribed Symbicort but I am one that has NEVER taken medications as the first course. I found I had a gift for research when I worked on my Ph.D. so I have been doing a lot of research on these two diseases trying to find clinical study results. I read that the symbicort and like inhalers haven’t yielded positive results for those like me because the cases are based on people with Cystic Fibrosis for the most part. But, it does come with side effects. I decided to wait on the symbicort. I used Xenopex when my lungs get very tight and constricted. I use the Smart vest and my husband also does the percussion cupping on my back. I use some breathing exercises that help open my lungs and have air purifiers in most rooms in my house. I am going to start therapy to increase my lung endurance in a week and see how that goes. Mindfulness exercises and meditation help me not project into the future but stay in the present and be able to get through the bad days when my breathing is quite labored. Changes in the weather seem to trigger these incidents.
I am currently trying to find information on steam cleaning, distilled water, and effect on MAC and Bronchiectasis.
That’s a little about me. LOL.

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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To tag someone in a post do so as you would w/Twitter, @ and their user name

Liked by pfists, jewel8888

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I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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@ruhdesb

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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Welcome back @ruhdesb. I moved your message from Lung Health to this active discussion in the newly formed MAC group on Connect https://connect.mayoclinic.org/group/mac-bronchiectasis/
As a fighter, we welcome you to this amazing group of fighters. You might have MAC, but MAC doesn’t have you.

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@melrosedecosmo

Hello! I am so happy to connect with a group who I can relate to with regards to our current state. I was diagnosed with MAC & Bronchiectasis July 2015 and had many bouts with pneumonia and hospital stays.

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@melrosedecosmo, Hello Rosie, WOW! what you have been through! You are DEFINITELY NOT alone .. you have found a very nice supportive community of people who are all on this MAC journey together .. you are home! SO glad you have found a way to still exercise .. it is SO important to keep our lungs healthy. When I was first really sick I was coughing so much I really damaged my back .. stopped the Nordic Track work out I had been doing since my 30’s .. my back hurt too much . Then somehow got out of the routine .. shame on me .. now am REALLY trying to get back on track KNOWING just how important exercise is to our health .. good for you!

Trust your Mayo doctor .. they put together a BIG puzzle to determine if/when to do antibiotic treatment. If “Since the changes in the MAC growth are small he wants to wait.” .. that sounds like a good move. If the mycobacterium is NOT colonizing quickly I’m sure he wants you to regain as much strength as possible before starting the antibiotic treatment.

In terms of an inhaler .. I can only speak for myself BUT .. I have been “stable” from the antibiotic treatment since May 2014 .. still dealing with the Bronchiectasis. Since the sputum created from Bronchiectasis can become a breeding ground for NEW mycobacterium .. it is VITAL that we do our “daily lung hygiene” which means coughing up as much of that sputum on a daily basis as possible. For me this has been made easier by my TWO inhalers .. Atrovent and Qvar. I find WITHOUT them I just CANNOT get up the sputum. SO two times a day am and pm before I brush my teeth I use TWO puffs of each one. That is all it takes for me to cough up some rather unpleasant “stuff”! Without my two inhalers I merely cough up clear sputum most of the time .. not the yellow. I can only speak for myself .. but the benefit of getting all that out of my lungs/bronchial tubes FAR outweighs any other concern. I do NOT want another mycobacterium! I ALREADY have two different strains in my lungs .. I don’t need a THIRD mycobacterium!

If the Vest works for you and you are able to get what you feel is all the sputum possible up .. each person is different. For me the Vest just didn’t work .. truthfully I just tossed it .. was told I couldn’t donate it .. personal item.

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!

Rosie, sound like you are really trying to do all you can to be as healthy as possible .. that is just great! Just keep on .. keepin’ on! Hugs to you … and keep on coming back .. hope just a little of what I’ve said resonates and helps! Hugs to you! Katherine

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@ruhdesb

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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Hello @ruhdesb (do you have a first name .. much more personal!) Welcome back .. we’re glad you’re here! Really the decision when/if to go on antibiotic/or NOT is a puzzle .. a GOOD Infectious Disease doctor that treats MAC patients can help you make a wise decision for YOU! You have been through a WRINGER with your health already .. AND unless the mycobacterium is/are colonizing and all the other factors are not there .. I don’t think a knowledgeable doctor WOULD tell you to go on the antibiotics!

You said “CAT last week showed increase in MAC ” .. I think if I was sitting in your shoes feeling the way you do . . I would request quarterly check ups and monthly sputum cultures to see just HOW RAPIDLY the MAC is increasing. THEN with that comparison under your belt .. I think you could make a good decision for your own health. IF you DO decide to go on the antibiotic treatment .. if you read the past pages of our Forum .. you will read how to avoid yeast infections with probiotics .. all the different things you will need to do. Your only responsibility is to your own body .. your own health. Educate yourself to your disease .. think through your options .. ONLY YOU can decide what is right for you and your body. Whatever your decision .. we will support you. Hugs to you! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@pfists .. Shari , thanks for jumping in . I have no knowledge of RA .. so it is great helping each other like this when in addition to MAC there are other issues! Hugs! Katherine

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@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don’t know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others’ experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888 .. Julie, thanks for your post! This is all so interesting! Your statement ‘my body likes “old school meds’. I absolutely think this is SO relevant! YES so many new exciting drugs are coming out .. BUT there is LITTLE time tested research on them! WHEN IN DOUBT .. request the older generic drug! They have the MOST data backing them up.

I JUST had this experience. My husband is doing WONDERFULLY with his CLL on a chemotherapy call Imbruvica. It is said if you don’t have problems with it upfront .. it can be come ‘life sustaining” .. not a cure but ‘life sustaining’. WELL all of a sudden his Oncologist “suggests’ a change to a new drug . . he had just been to a conference on it 12/16. You know me .. I did my “due diligence’ .. spent half a day on it. NOPE!! Just ONE of the factors I found: I won’t name the drug .. ‘. March 2016 The company stopped 6 trials on Monday after reports of serious side effects–including multiple deaths–among participants in several of the studies.’ That was just ONE of the 3 VERY negative things I found on the drug! I am fully aware that doctors do NOT have half days to research every new drug they hear about .. BUT this is why I SO stress ‘due diligence’!

All your examples speak right to my recent experience! We ALL must continue to do our due diligence! Katherine

Liked by jewel8888

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@ruhdesb

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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I was on probiotic with diverticulosis treatment and it didn't stop the infection. I have read and reread the forum. Infectious disease Dr. said no to antibiotics at my age, Pulmonary Dr. is the one pushing it, Gut Dr. said no…so I am pulled in many directions. I just figure if I am not that miserable I'll will stick with what is. Utter fatigue seems to have subsided so as long as I can be mobile and take care of myself I won't choose the meds. My name is Ruth…20 years free from RA flareups. A miracle here in Santa Barbara. I note the high concentration of MAC in my area…has anyone at all mentioned chemtrails that are so prevalent these past years. I know my system was compromised by the RA meds of 10 years AND I live about 4 months in Mexico in a very very windy dusty place….so lots of ways I could have contacted MAC. How do I stop all the notifications from Mayo Connect replies?Ruth

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@ruhdesb

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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Never mind….I fixed the notifications.

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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@pamelasc1, Pamela, I have no idea if you or anyone else is interested .. but I
was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I ONLY found it in the UK but the delivery was fairly fast .. and I found it decent to breath with. I now will carry it as needed. Hope you find this helpful! Katherine

http://www.cambridgemask.com/buy-a-mask/international/ 22 Euro 12/16

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@ruhdesb

I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity…go figure. I guess I don’t feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn’t make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn’t have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.

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@ruhdesb, Ruth it sounds like you are really on the right track with your decisions. Personally I would listen to my Infectious Disease doctor .. they know more about MAC . if they say No .. I’d run with that .. PLUS you prefer not to. Why go any further?! I am age 73 so I know decisions are made on a lot of things including age. Good luck to you .. come back whenever it feels right .. we will be here! Hugs! Katherine

Ruth, I was told:
“the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. You can control your account settings here: https://connect.mayoclinic.org/account
You can: – Turn off all email notifications
OR – Select to receive only those groups and discussions you follow
Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/
PS: You can also click unsubscribe at the bottom of any email you receive from Connect.

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