(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

@stsagris

Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago and she was started on antibiotic regimen (rifampin, ethambutol, and azithromycin). She has since developed extreme debilitating anxiety where she cannot function during the day. Her personality has also changed drastically. She cries constantly, and is terrified of things that would not have phased her in the past. We are looking for answers but not coming with anything. Has anyone experienced anything like this?

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@stsagris, Oh that poor woman!
Have you asked her dr about putting her on a mild sedative or anti- anxiety med? At least long enough to retrain her brain not to freak out or until she acclimates to the meds.

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@windwalker

@lampstone Hi there. I am sorry your mac is back, but not surprised. My Mayo doc has me on maintenance (preventative) meds although I have tested negative since 2014. It is a light dose of 10 day a month antibiotics. Sometimes a 28 day of tobramycin to keep the pseudomonas away. Were you also diagnosed with bronchiectasis?

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Yes. Since the beginning in 2014.
I saw the radiologist report of my chest CT last week. First time I have had “tree in bud” on an X-ray.

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@lampstone

Yes. Since the beginning in 2014.
I saw the radiologist report of my chest CT last week. First time I have had “tree in bud” on an X-ray.

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@lampstone Pam, as my dr explained to me….when you have bronchiectasis, you are never out of the woods from getting mac and pseudomonas. That is because the lungs are structurally damaged and will always be susceptible to trapping these germs. My dr is treating the bronchiectasis, not infections. I had the tree in bud thing going on also.

Liked by heathert

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@kathyhg

Oops. Sorry for another post but I thought you meant Western University (hospital) rather than Toronto Western Hospital.

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@kathyhg Hi Kathy. Just want to wish you luck with your dr appointment tomorrow. Hugs!

Liked by Garnet, tdrell

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@windwalker

@kathyhg Hi Kathy. Just want to wish you luck with your dr appointment tomorrow. Hugs!

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Thanks! I have my list ready.

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@windwalker

@stsagris, Oh that poor woman!
Have you asked her dr about putting her on a mild sedative or anti- anxiety med? At least long enough to retrain her brain not to freak out or until she acclimates to the meds.

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Yes we have tried several and none of them are working. Just looking to see if this is a possible explanation. Thanks for your reply!

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@128128terry11t

I had similar effects but probably not as severe as your step-mother. Ultimately my body acclimated (don't remember how long but maybe 3 months or so). I would jump if the phone rang! Just remember that your Mom needs to be checked regularly for visual, hearing side effects. Not a bad idea to make sure that her thyroid is not out of whack and causing some of the nervousness. Also, not a bad idea to see a therapist so that your Mom would be able to confront and change some of the unreasonable beliefs that she has about this condition. She is indeed fortunate to have such a caring daughter-in-law. Wishing her the best.

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Thanks so much! Maybe it’ll help that she knows others have gotten through it!

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@windwalker

@lampstone Hi there. I am sorry your mac is back, but not surprised. My Mayo doc has me on maintenance (preventative) meds although I have tested negative since 2014. It is a light dose of 10 day a month antibiotics. Sometimes a 28 day of tobramycin to keep the pseudomonas away. Were you also diagnosed with bronchiectasis?

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Although I haven’t entered the discussion for quite some time, I’m sending my thoughts to all who are challenged with various infections. I also have a question-I was diagnosed with bronchiectasis in 2017 and now nebulizer twice daily with albuterol and 7% saline, along with twice daily vest therapy. I have experienced one exacerbation but no infections to date. Although I am very happy about this, I’m guessing there are no similarities in how this disease progresses?

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@migizii

Although I haven’t entered the discussion for quite some time, I’m sending my thoughts to all who are challenged with various infections. I also have a question-I was diagnosed with bronchiectasis in 2017 and now nebulizer twice daily with albuterol and 7% saline, along with twice daily vest therapy. I have experienced one exacerbation but no infections to date. Although I am very happy about this, I’m guessing there are no similarities in how this disease progresses?

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@migizii Hello, yes, my Pulmo, who sees hundreds of Bronch patients tells me every person’s situation is different. Glad you are doing the work and enjoying results.

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@brigby

@migizii Hello, yes, my Pulmo, who sees hundreds of Bronch patients tells me every person’s situation is different. Glad you are doing the work and enjoying results.

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Thanks for this reply, although it seems like sheer luck that I don’t get an infection and someone else does.

Liked by Brenda R.

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@stsagris

Hello, my 73 year old step-mother was recently diagnosed with MAC infection about 1 month ago and she was started on antibiotic regimen (rifampin, ethambutol, and azithromycin). She has since developed extreme debilitating anxiety where she cannot function during the day. Her personality has also changed drastically. She cries constantly, and is terrified of things that would not have phased her in the past. We are looking for answers but not coming with anything. Has anyone experienced anything like this?

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@stsagris Sorry to hear about your step-mother's anxiety — but we sympathise and understand. I agree with others about the psychological side effects of the Big 3. But please also note that getting this diagnosis, and finding out about the risks and how weak your immune system is now, often causes a great deal of anxiety and emotional distress too — at least for several months. This can take time to adjust to, but the person with the illness will slowly begin to adjust over time. Best of luck to you and your step-mother

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@lampstone

I am 71 years old. I was 67 when I began taking those same three antibiotics 3 times a week. After no improvement – I was increased to the same three antibiotics 7 days/week. I continued this regimen for about 4 years.
I began to think I was showing severe signs of dementia after having difficulty finding local area destinations I had known for 30 years. I even had trouble finding my way around Mayo after doing the same routine appointments three or four times a year for 4 years! In addition to confusion and temporary memory loss while on the antibiotics, I also had terrible mood swings and paranoia.
I shared all of this with my Mayo pulmonologist. Since my bacteria count was so low by 2018, it was believed I needed a break; I was put on a “med holiday” for one year. Yay!
During my year off the antibiotics, I realized I was able to find my way around town with no issues, and my “feeling lost” and “in a fog” while at Mayo was also gone. The mood swings, paranoia, and confusion were totally gone. I felt so much better mentally.
But here I am again a little over a year later, my lung health is not good again – and, I am going to find out tomorrow what the new plan is. I do know that my mental health will also be considered when choosing antibiotics. I am so glad and very thankful I have a pulmonologist I can trust. Don’t be afraid to ask questions and to share how your lung health treatment might be effecting your general health. Hoping thus helps a little. And – please tell stepmom’s pulmonologist what she is experiencing. Be Blessed.

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@lampstone Thanks for letting us know this Pat — it explains a lot to many of us. Please keep in touch. Your advice and kindness is much appreciated. I wish all the best for you — please let us know what comes next and how you're going. Hugs to you

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@migizii

Although I haven’t entered the discussion for quite some time, I’m sending my thoughts to all who are challenged with various infections. I also have a question-I was diagnosed with bronchiectasis in 2017 and now nebulizer twice daily with albuterol and 7% saline, along with twice daily vest therapy. I have experienced one exacerbation but no infections to date. Although I am very happy about this, I’m guessing there are no similarities in how this disease progresses?

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@migizii Hello. This disease bronchiectasis and it's subsequent issues of mac can progress at various speeds. Some are very rapid, others so slow that people die of something else, or natural causes. There are many variables. For instance, are there other co-morbid diseases present (like pulmonary hypertension, Alpha-1, pulmonary dyskinesia, emphysema, Cystic Fibrosis, etc.). These other co-morbid diseases can help to drag a person down, making it hard to fight off bacterial infections. Some patients also have immunity issues. Some people live in areas where they are receiving extra heavy bacterial loads of mac and/or pseudomonas. Another factor that can affect outcomes is becoming resistant to antibiotics. It is very important to follow an antibiotic regimen.

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@windwalker

@migizii Hello. This disease bronchiectasis and it's subsequent issues of mac can progress at various speeds. Some are very rapid, others so slow that people die of something else, or natural causes. There are many variables. For instance, are there other co-morbid diseases present (like pulmonary hypertension, Alpha-1, pulmonary dyskinesia, emphysema, Cystic Fibrosis, etc.). These other co-morbid diseases can help to drag a person down, making it hard to fight off bacterial infections. Some patients also have immunity issues. Some people live in areas where they are receiving extra heavy bacterial loads of mac and/or pseudomonas. Another factor that can affect outcomes is becoming resistant to antibiotics. It is very important to follow an antibiotic regimen.

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Thank you for all this information. I do not follow any antibiotic regimen and have only taken them once when I was sick. Otherwise, I follow a nebulizing and lung clearing program (with a vest as I don’t bring up mucus with the clearance devices).

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@windwalker

@migizii Hello. This disease bronchiectasis and it's subsequent issues of mac can progress at various speeds. Some are very rapid, others so slow that people die of something else, or natural causes. There are many variables. For instance, are there other co-morbid diseases present (like pulmonary hypertension, Alpha-1, pulmonary dyskinesia, emphysema, Cystic Fibrosis, etc.). These other co-morbid diseases can help to drag a person down, making it hard to fight off bacterial infections. Some patients also have immunity issues. Some people live in areas where they are receiving extra heavy bacterial loads of mac and/or pseudomonas. Another factor that can affect outcomes is becoming resistant to antibiotics. It is very important to follow an antibiotic regimen.

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@windwalker Check this potential therapy out. https://www.genengnews.com/insights/phage-therapy-win-mycobacterium-infection-halted/

Liked by heathert, anniepie

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