Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@sueinmn

Hello, and welcome – receiving this kind of news is very upsetting, especially when you begin to read about MAC – just remember that you have this community to share your questions and concerns. As Jennifer (@megan123) told you, there has been some change in treatment protocols for MAC over the past few years, especially in looking closely at the number of "colonies" identified in the cultures when deciding whether to start antibiotics.

That said, since you are seeing the pulmonologist today, if the recommendation is the same – watch and see – you may want to ask about using increased airway clearance and hypertonic saline (7% vs the usual .9%) to try to keep the bacteria under control. Here is an article for you, with links to the underlying studies: https://bronchiectasisnewstoday.com/bronchiectasis-experimental-treatments/hypertonic-saline-solution/

Many on this group, including me, have managed to forego the rigorous "Big 3" and stay healthy… I managed to avoid any exacerbations for 18 months, my recent setback has been brought under control within a short time without antibiotics.

Good luck today!
Sue

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A newbie question: What are the symptoms of MAC? Does one contract it by being careless with sterilization of nebulizer?

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@flamelilly7

I have just recently been diagnosed with MAC. I have a lovely Infectious Diseases doctor but when he told me I think my mind was trying so hard to grasp what he'd said that I didn't really hear anything else he said and I couldn't think of any questions to ask him. Of course I have so many questions now. I'm hoping someone will be kind enough and honest enough to answer my questions, especially the first one.
(1) What does end stage MAC/NTM look like. Do we suffocate to death?
(2) I haven't started my treatment yet because I'm terrified of the side effects. The anti-biotics I have are Azithromycin, Ethambutol and Rifampin. Could anyone please tell me if they have been on these and what being on the treatment is really like.
(3) Does anyone really get completely healed from this disease?
If anyone would answer with anything I would so appreciate it.
Flamelilly7

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It’s scarey when u first get diagnosed..knowledge is power..the more you get the less anxious you will feel..I was on the big 3 two years ago, and tolerated it well…MAC is not a death sentence..we can still live productive lives, implementing airway clearance, nebulizing 7 percent saline, Aerobika etc..we grieve the loss of our health initially, but in time you will feel better💕

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@flamelilly7

I have just recently been diagnosed with MAC. I have a lovely Infectious Diseases doctor but when he told me I think my mind was trying so hard to grasp what he'd said that I didn't really hear anything else he said and I couldn't think of any questions to ask him. Of course I have so many questions now. I'm hoping someone will be kind enough and honest enough to answer my questions, especially the first one.
(1) What does end stage MAC/NTM look like. Do we suffocate to death?
(2) I haven't started my treatment yet because I'm terrified of the side effects. The anti-biotics I have are Azithromycin, Ethambutol and Rifampin. Could anyone please tell me if they have been on these and what being on the treatment is really like.
(3) Does anyone really get completely healed from this disease?
If anyone would answer with anything I would so appreciate it.
Flamelilly7

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Good Afternoon, Flamelilly,
Hello, and welcome to the Mayo Connect community. We are people living with a wide variety of diseases and conditions, who try to help one another along the way. We each strive to be informed medical consumers, and our own best advocates in our care. We are not medical professionals, so not able to provide medical advice. We can tell you what has worked for us (or not) and provide you with information and conversation about your question.

Whenever I get bad news in the doctor's office, especially if it about something I never heard of before, my first reaction is often to panic, and get what my daughter calls "brain freeze" no idea what to ask, what to do… that happened to me 3 years ago, now I try to help others travel this road.

First – DEEP Breath! – Literally and figuratively – for the most part MAC and the Bronchiectasis that usually goes with it – is by and large a condition we LIVE with – not something we die from. There are NUMEROUS treatments used, individually and in combination.

Here in the discussions of MAC/NTM and Bronchiectasis, nearly all of us started just like you. In addition, many of us were quite ill for months or years before the right diagnosis, because so many care providers are not well-versed in it as a fairly rare condition. On Connect you will find dozens of people happy you help you with information and encouragement, many who have done a lot of research and study.

From your questions, I am guessing you are suffering from extreme shortness of breath and coughing – these are treatable, sometimes with airway clearance and inhaled meds, sometimes with antibiotics, sometimes both. The question about a cure – that irritating term "it depends!" If you have Bronchiectasis, COPD or another lung disease, it won't be cured – just managed. MAC is hard to "cure" because it is everywhere, and tends to sneak back in, but treatment can knock out a majority of the infection, and with other strategies it can be managed without antibiotics, sometimes for long periods.

You can read more about my journey here, and in some of my posts: https://connect.mayoclinic.org/member/00-b4b2c4df9c7bfa4e138993/. You can use the search box and type MAC and Big 3 to read about the antibiotics. They are not fun, but manageable for most people.

We can answer you better if you share a little about your health and your journey with us. I look forward to hearing from you as you travel this road.
Sue

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@patsolstad

A newbie question: What are the symptoms of MAC? Does one contract it by being careless with sterilization of nebulizer?

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Hello, and thanks for the question.
Here is some information about MAC to get you started: https://www.lung.org/lung-health-diseases/lung-disease-lookup/mac-lung-disease

As for the second part, mycobacteria are everywhere – in air, water and soil. Those of us with underlying lung conditions are more prone to infection from it, but nearly never know where we "caught" it. Proper cleaning of nebulizers and inhalers is important to prevent any infection from getting a head start in your already compromised lungs though. Here is what the Americal Lung Association recommends for cleaning your nebulizer :https://www.lung.org/lung-health-diseases/lung-disease-lookup/copd/patient-resources-and-videos/how-to-clean-a-nebulizer If you also use a vibratory airway clearance device, follow these instructions or the ones you received with it.

Happy to answer any more questions you may have!
Sue

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@sueinmn

Hello, and thanks for the question.
Here is some information about MAC to get you started: https://www.lung.org/lung-health-diseases/lung-disease-lookup/mac-lung-disease

As for the second part, mycobacteria are everywhere – in air, water and soil. Those of us with underlying lung conditions are more prone to infection from it, but nearly never know where we "caught" it. Proper cleaning of nebulizers and inhalers is important to prevent any infection from getting a head start in your already compromised lungs though. Here is what the Americal Lung Association recommends for cleaning your nebulizer :https://www.lung.org/lung-health-diseases/lung-disease-lookup/copd/patient-resources-and-videos/how-to-clean-a-nebulizer If you also use a vibratory airway clearance device, follow these instructions or the ones you received with it.

Happy to answer any more questions you may have!
Sue

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Thanks so much, Sue. This is very helpful information. And now I have another question!! What is postural drainage?

I will try not to ask any more questions for a while…

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@patsolstad

Thanks so much, Sue. This is very helpful information. And now I have another question!! What is postural drainage?

I will try not to ask any more questions for a while…

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You are getting right to the "meat" of things. Questions are fabulous – ask them as they come to you!

I'll try to give you a basic explanation, if you want to read more just Google it. Postural drainage is the process of using gravity, with or without manual percussion (thumping/clapping) to encourage mucus to move from deep in the lungs, up through the airways where it can be coughed up. It was originally used for Cystic Fibrosis, but has been found to work with Bronchiectasis, COPD, even pneumonia. It is generally used immediately following the neb to be most effective.

Here is a slide show showing positions https://www.slideshare.net/Rv_252/postural-drainage-116651539 It is good to know which parts of your lungs are most affected so you can focus your efforts. For example, I am in the midst of an exacerbation (flare up) in my lower lobes, so once a day, after I neb, I do the hips-up posture for a few minutes to get the junk up. My upper lobes clear easily with the neb & coughing.

If you do not have someone to do the "thumping", you can use a vibratory airway clearance device (Aerobika and Acapella are most common – Google them)

If you think you need to use postural drainage to clear your lungs, it would be best to have a couple training sessions with a Respiratory Therapist to get the positions and techniques just right for you.

Keep reading, and keep asking –
Sue

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Thanks again, Sue. This is very helpful.

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I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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@thielmann1 Who is your Pulmo @ Stanford? I see Dr. Sung.

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@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

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@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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In reply to @thielman…. I have had bronchiectasis since 2017 (diagnosed) but have never had MAC/NTM’s…I feel for you so much! Take care and keep us posted.

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@janrn1

Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

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Hi Jan,
I thought I would answer your question sent by the Contact a Moderator form here in this discussion.

Here is a list of pulmonary specialists practising at Mayo Clinic at all 3 locations:
https://www.mayoclinic.org/departments-centers/pulmonary-medicine/sections/doctors/drc-20397851
You can filter by location
– Rochester, MN
– Jacksonville, FL
– Phoenix/Scottsdale, AZ

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