1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

auntnanny | @auntnanny | Aug 26, 2018
In reply to @auntnanny "flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer..." + (show)
@auntnanny

flib --- Yes, I do order from Amazon. I bought the kind that said for nebulizer and it's 9 cc but I thought if I didn't want to use that much, it was still less expensive than a prescription. I've used this for about a year now and as far as I can tell, it's the same as a prescription. You might look at the inhalation saline there and see what you think.

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You are young and look like a teenager -- I wouldn't update that photo if I were you. It's great !! Now, I'm not planning to update either -- going on 78 now and you can imagine what 5 years does to an old lady. it's not good !!!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 26, 2018
In reply to @auntnanny "Windwalker ---- thank you for this post. I have been doing what I think is pretty..." + (show)
@auntnanny

Windwalker ---- thank you for this post. I have been doing what I think is pretty well for about 10 months now. Have had only two sessions of antibiotics in that time. (Better than when I started with every two weeks). I have been nebulizing once daily with albuterol followed by saline (as told by Mayo doctors in Rochester. Also, I have been using two Benadryl capsules each day which it seems to me have been really helpful. I worry, though..... wondering if I am masking symptoms. After the saline, I can usually cough up a little bit of phlegm -- but not much. I'm hoping that is all that's in the lungs but wonder if the Benadryl is detrimental. I do have allergies and I don't have the nasal drainage when I use it. I feel okay (I think) -- sometimes I wonder if I truly know how I feel. But, I'm not short of breath -- have never been -- and doing what I am, I'm not coughing much. One session of the saline seems mighty helpful in that if my throat needs clearing often, it feels clear after the saline. I started with 3 mg of saline but as I purchased more through Amazon, the last I've had is 9. I just sit a little longer and do the larger amount and am assume that's okay. Do you have an opinion about this? Appreciate your comments are you are without question -- quite knowledgeable. Thank you

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Fig. 3
Fig. 3
Inverse correlation between salt tolerance and host adaptation in mycobacteria

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hydrang3a | @hydrang3a | Aug 26, 2018

My MAC has created a 6cm lung abscess which is being treated with four antibiotics. I am going to National Jewish in two weeks for further analysis. Does anyone on this site have an abscess in addition to MAC and if so how have you treated it? I have read that surgery is the most successful option.

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1 reply
america | @america | Aug 26, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Hi cindyrnc, my pulmonologist said I should not use Humira because it can make my immune system really weak. I struggle with pain every day and it’s so hard to deal with flare- ups. I just use over the counter meds and it does not help much. Do you have side effects? What about infections? Any help will be appreciated! Thanks Rita.

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beverly1945 | @beverly1945 | Aug 26, 2018
In reply to @hydrang3a "My MAC has created a 6cm lung abscess which is being treated with four antibiotics. I..." + (show)
@hydrang3a

My MAC has created a 6cm lung abscess which is being treated with four antibiotics. I am going to National Jewish in two weeks for further analysis. Does anyone on this site have an abscess in addition to MAC and if so how have you treated it? I have read that surgery is the most successful option.

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Sorry I just found out that I have Mac but I only cough when asked sounds silly but true after having it for 9 mos just diagnosed .If a person says cough then you can hear it sounds strange but no antibiotic needed right now .

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rmason | @rmason | Aug 26, 2018
In reply to @sueinmn "New question - How do you avoid weight loss on MAC antibiotic therapy? I was recently..." + (show)
@sueinmn

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

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@sueinmn Maybe some of you folks that don’t tolerate dairy due to lactose intolerance may do OK with Fair Life milk-it’s a widely available milk that has much of the lactose filtered out. I know you can get it with 2% milk fat and possibly as “whole” milk.

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rmason | @rmason | Aug 26, 2018
In reply to @sueinmn "New question - How do you avoid weight loss on MAC antibiotic therapy? I was recently..." + (show)
@sueinmn

New question - How do you avoid weight loss on MAC antibiotic therapy?
I was recently diagnosed with bronchiesctasis and sent to a pulmonologist by my primary physician. The cause was a seemingly endless asthma attack with a violent, productive cough that lasted for many months. He did many tests and cultures and diagnosed & treated pseudomonas for 2 months (4 courses of antibiotics (levaquin/tobramycin) and the cough continued. When I saw him for a followup, he apologetically told me I have MAI, and due to the cough, bronchiectasis and the lung damage showing on my CT scan, he felt it needed to be treated.
Enter the big 3 antibiotics - Rifampin, Ethambutol & Clarithromycin. He patiently spent time talking to me about the therapy and side effects, had suggestions about using live-culture yogurt & probiotics, and advised me to do my own research while waiting to start (had to finish Levaquin). He & his nurse were great at answering follow-up questions, but here is one for the group.
I began this journey at age 66, 5'2" tall and weighing 116 pounds, and I know I need to stay above 110# to feel okay. I also cannot eat any wheat products or tree nuts. The first 10 days of therapy is going well except intermittent nausea and slight diarrhea. But I have lost 3 pounds already without being sick, and I know from experience that there will be side effects from using antibiotics long-term. Any suggestions for maintaining my weight? I cannot tolerate Ensure and most products like that, which my doc suggested, so it's not an option. I also cannot eat any wheat products or tree nuts. Any suggestions for maintaining my weight?

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@ling123 I too had coughing up blood as my only symptom. I have not lost weight on the antibiotics. I am curious if the folks who are having all of the weight loss are also expending a lot of calories from being short of breath? Or, at present the antibiotics adversely affecting your appetite from side effects like nausea?

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beverly1945 | @beverly1945 | Aug 26, 2018
In reply to @alleycatkate "@windwalker ..Hi Terri...do you use the acapella device for clearing your lungs? If so, which one?" + (show)
@alleycatkate

@windwalker ..Hi Terri...do you use the acapella device for clearing your lungs? If so, which one?

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So do you still have the disease

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beverly1945 | @beverly1945 | Aug 26, 2018

I’m so confused need advise please

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9 replies
Margie E | @margiebanks | Aug 26, 2018
In reply to @beverly1945 "I’m so confused need advise please" + (show)
@beverly1945

I’m so confused need advise please

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@beverly1945 I feel the same but am so grateful to have found this group 2 weeks ago. I've been learning a lot by going to the "discussions" page and reading older posts. Like you, I have questions... Hang on tho, from what I see, a compassionate member will reach out. @windwalker

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