(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

@maryjo2sell

Hi Terri- Just hard to find time to do everything lately. Seems by the time you do the nebulizer an hour has gone by. I do the laundry, shop for groceries, clean the house, take care of my grand daughter and clear the lungs about 2PM. Pretty much ends the day except for dinner and dishes.
Far as fungus, had a couple colonies of exophiala, had the streptococcus and haemophilus influenzae. It seems that the strep and the influenza have a tendency to go together. Since that time, I took doxy, levoquin and keflex so something knocked them out because they did not show up in the next sputum sample.
I read my oxygen level before going to bed and if it is below 95% i use the oxygen for awhile. I have to admit it does help me sleep better. So far I have not had to have a nighttime reader.
Just rereading your post and see you had mentioned the “exophaila”. The doctor also did not mention it to me but It did not show up again so probably killed it with ABX. I would figure they do not want to freak us out too much by mentioning that we also have a “black fungus” growing in our lungs! Especially if they feel the ABX will knock it out. They cultured the mycobacterium and it did not grow, so that was great news.
At the moment, feeling pretty good. I am like you though, waiting for the humidity and heat to go down. Being outside in it is difficult on the breathing.
Love the air conditioning!!!!
Fondly, Mary Jo

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I am glad for you Windwalker.  We have a house in Largo near Clearwater and Tampa and we were blessed also. God was with us!

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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Thanks Ling for the info.  That is exactly what my INFECTIOLOGIST  SAID TO ME! I have bronchiectasis also and I have a similar condition as you. That is why I take clear lung to eliminate the sputum from my lungs.  I had radiation after a breast cancer

level 1 .  It is probably where the problem came from. The Dr can't tell for sure. I appreciate your information. 

Liked by ling123

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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I am talking about the Clear lung!

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@auntnanny Gosh Jan, if it is not one thing, it is another! I am so sorry to hear about the pseudomonas, that seems to come with the MAC/bronchiecstasis territory. I had it last year and was put on nebulized tobramycin and cipro on alternating months. Those two meds got rid of it. I am not familiar with bacterim. Ask for your lab report and make sure it includes the suseptability test. That is the test that shows what antibiotics will and will not work on your infection. That may be why your dr chose that specific antibiotic. I hope you are feeling better soon. Hugs, Terri M.

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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Nick
If you read about MAC most articles talk about either nodular or cavitary. Cavitary is treated more aggressively. The type is determined by CT scan. Your doctor can tell you.

Thanks
Kay

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@unicorn Ahhhhh Christa! So GLAD to hear from you! I am also glad that you are on a breathing and exercise program. What kind of exercise are you doing? I know this battle can get old, but stay the course girlfriend. The fact that the bleeding has stopped seems like a good sign to me. Like you, I get in a bad way too if I get overly exerted. I am hard-headed, but I have finally learned to respect my limitations. (mostly), don’t forget, I am hard-headed : ) Please don’t be a stranger, and check in from time to time. I truly worry about you when I don’t hear from you for awhile.

Hugs, Terri

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@pamelasc1 Hi Pam! That is great that your’s cleared up in only two weeks.

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Thanks, Terri, for your note. I’m on cipro for two weeks. Had it once previously and cipro did the trick — hoping for the same result this time. thanks for checking in

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@jkiemen, Hi Jo Ann. Yes, antibiotics tend to kill off the good bacteria in our gut. It is recommended that you take your probiotics at least two hours before or after a dose of antibiotics. This subject is on my list of things I plan to learn more about. I drink Kefir milk daily. It is lactose free and full of probiotics. I also eat yogurt often. Taking probiotics should be on all of our minds if we are on a constant regimen of antibiotics.

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@auntnanny

I’m not sure if this is the place to post but….. hopefully some will have answers for me. I have bronchiectasis and went through a “flare” — took clindamycin as that had been the last antibiotic used but this time, it really didn’t seem to work. I contacted Mayo’s and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I’ll fax this report to Mayo’s Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you…..

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@pfist, thank you for the warm welcome back. It is good to be back! I am glad you posted this about the pseudomonas. Glad to know that it is quickly cultured and easily treated. Our forum friend, @pamelasc1 also posted that hers got resolved in two weeks. These two posts will help others when they read it. Wish I had seen posts like these when I was diagnosed with it last year. It kind of freaked me out a bit.

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@ling123, With that said, Ling, I feel like those choosing not to take antibiotics should at least be nebulizing the 7% saline twice a day. It is not a drug, (our bodies are mostly saline anyway) and it does a lot of good. It’s just good lung hygiene. It moistens the plegm so that it comes up and out easier too. Ling, I know that you know this already. I am am replying for others to see it. BTW, I hope you are doing well. – Terri

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@nick52, I believe you that it works. I have my old stand-by too. I drink ‘Breathe Easy Tea’ by ‘Traditional Medicines’ found at some grocery stores like Kroger and Fry’s. Whenever my chest feel very tight, it opens my airways. Also, calms a cough. I haven’t had to drink it the past year because my lungs have cleared up totally after I was treated for pseudomonas.

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@windwalker Hi Terri, welcome back and glad to know that you were OK during the hurricane. Good suggestion about using the nebulizer. I have an appointment to see my pulmonary doctor on Oct. 5. Will inquire about that. I’m also seriously considering giving Clear Lung a try as @nick52 has suggested. Thanks for asking, Terri. I’m doing great. Just came back from a 8-day trip to the Grand Teton National Park and did some hiking there when the weather was suitable. The longest I did was about 14 miles with an elevation gain of over 4,000 feet. Had to trudge through some snow that had fallen on top of the mountain the night before. Not bad for someone with lung issues. Never had breathing problems during the hikes. But my feet and leg muscles were a different story.

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@jkiemen, I went to the conference in D.C. last spring. It was put on by NTM Info & Research. They are trying to get more funding for research. At the moment, mac/bronchiecstasis is considered an ‘orphan disease’ because the reported numbers of us are low. NTM is the only ones I know of right now trying to put together a data-base of those of us who have it. They asked at the seminar that the patients who attended please sign up on their registry. They need real numbers to show when they apply for grant money to do the research. I have signed in myself. You can visit their website at http://www.ntminfo.org to learn more about it. They also have a support group at http://www.BronchandNTM360social.org I signed onto that also, but did not find the community there as helpful and supportive as this one. It may have changed since I last looked at it though. I also think that it is not going to be an ‘orphan disease’ for long either as more and more people are getting this. Even healthy people are catching mac. I would suggest going to your municipal water company and ask for the REAL water test results at their facility, not the simple ones they post on their websites. I plan to go to ours in person because they have not returned my e-mails. WE MUST ALL BECOME ADVOCATES! Contact the CDC and complain and demand answers. I have called them several times in the past, they are good about communication.

Liked by pfists

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@suttonmac2009

I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol twice a day. Then when I was tested negative for MAC after about 5 yrs, they reduced meds to 3 days a week for a year

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@nick52, I did a food elimination test on myself about 15 years ago and narrowed down which foods aggravated my lungs. I found that gluten and sugar were the biggest culprits. Food dyes also messed me up. Yellow and blue were the worst, for example: I cannot drink a Mountain Dew or I will cough incessantly from the yellow dye. I cannot eat Peanut M&M’s except the brown ones or I will cough my head off. I have been on a whole foods diet ever since and do so much better.

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