(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

@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
I tnihk the decision to treat MAC is based on a 3 pronged approach.sputum, how you feel and CT scan. A cavity showed on my scan and I was positive, not many symptoms. But cavities are treated aggressively. So is widely spread nodules maybe. So, the CT is a piece of the decision. Maybe your was clear.
Kay

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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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Hi Jo Ann, 

Clear lungs is an herbal med to clear lungs when it is congested. You can take one per day for prevention. It can be bought at a natural store or vitamine store. 

Ridge crest herbals(check on internet) it is efficient for me.

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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 Thanks for the information about Clear Lungs. Never heard of it before. Will definitely look into it. Just hope it helps expel the mucus and not just prevents it from coming up. The latter is actually bad for those of us with bronchiectasis because the excessive mucus accumulated in the bronchial tubes will trap bacteria and cause infections. The excess mucus needs to come out however you do to make that happen is helpful.

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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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Dear Ling 

I have tree buds, and bronchiestasis and nodules. I did the same no antibiotics but has lots of mucus. I have done the food allergy treatment NAET (check on internet) that has cut my mucus 90% I had mucus a little in my throat after

certain meal.it doesn't last long.  I cook all my food. Sugar, oil bothers a little bit but I am doing good with my clear lungs and probiotic non diary Dr Ahhiro. Thanks for your response! Appreciated

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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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Cavities are not always treated aggressively.  Depends on so many factors.  My cavity reduced in size, so they will closely monitor it.

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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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Hello – I had a very bad case of pseudemonas and it was treated with Levofloxacin (500 MG once a day for 10 days – it cleared up in 2 weeks. Hope this helps, Pamela in Boston

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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 do not cough but seen to have allot of mucus in the back of my throat. Like sinus drainage without sinus congestion. Can you tell me how you started to get

rid of that, did you start eliminating certain foods first or the clear lungs and what Probiotic are you using?

 

Jo Ann K

 

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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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Is there any evidence that the antibiotic also kills the probiotic that you are taking

JO Ann K

 

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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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There really needs to be more research into finding better antiotics and treatment for this.  I cannot understand why there is not a bigger effort in this direction.

According to the ID person I saw, there are many more people diagnosed with this than TB and there are probably allot not diagnosed. So how can we get together and get the CDC or even any of the drug companies to look at this. I suppose for the drug companies,

the research would have to result in the profit on the other end. Could the National Institute or Health or National Heart Lung and Blood Institute be involved.  Seems like we are all trying to find a cure for ourselves instead of of our Scientists, Epidemiologists,

MD’s looking at how to conquer this.  As it continues to grow in our city and home water supplies etc, why can’t more be done.   I just don’t get it. 

 

How do we get someone’s attention. Does a big Movie Star have to be diagnosed first?

Does anyone have an opinion or know more about where research is heading in this area. Perhaps someone that went to the conference in Washington DC last year.

 

JO Ann

 

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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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Hi Terri: unicorn Christa here. Computer went down and more complicated on cel but figured out. Have been following posts. My doc said I tested positive for Mac, big duh, sorry. I am on exercise and breathing regimen, ct in January. That will really
Say whether it is getting worse fast or not. No recent bleeding, but sometimes that scary caughing, when it hurts a bit and u think blood coming. Really bad when I am tired . 7 years on the big theee? !! Wow, I would be blind and dead. Thank u so much for your concern, I
May call if I get a scary bleed, so sweet of u to reach out!!! Waiting for new drugs.

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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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Probiotic is also prescribe here for certaine disease by doctor. Like Cdifficil bacteria. Probiotic give your intestine good bacteria.  It helps to fight the bad one.

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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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Dear Jkiemen

My first  best treatment is call NAET (look for it on the internet) it is an food allergie elimination treatment.  This is an alternative nature medicine treatment. There is 10 basic treatment. You do not have to stop eating the

food you are treated for.  It is hard to explain but it works believe me and my friend had the same problem as you lots of mucus coming in her throat also. She was doing the nettie pottie twice a day. After that treatment she is 80% better as far as the mucus

in her back of throat coming from her sinus. We both travelled 4 h to get that treatment it was worth it.  I live in New Brunswick Canada. That treatment comes from the United State I think. 

Clear Lungs is from Ridgecrest Herbal and you can get info from Prescription for Nutritional Healing By Dr Balch at  any book store.  Look under Tuberculosis. You can buy it in a good Natural Store.

The professional probiotic is Dr Ohhira's fermented Probiotics. You can google it on the web.

Do you have a lot of dairy product in your diet?

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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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The same as I Tree buds and nodule.  Today I saw my specialist and he said that in all the patients he sees with a MAC, he has never seen a case like mine. On all my CT scan there is no changes for few years now. I guess I must be doing something right!

 My breathing test was 94 which he says was good. I do not cough when I take my Clear lungs. Go to a library or a book store and read the book of Dr Balch on Nutritional healing, clear lungs and the sction on Tuberculosis.

Google also NAET.

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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 have tubular bronchiectasis also. It helps getting it out and my ctscan confirmed it!

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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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Kay,

What "cavities" you are talking about. My mother tongue is french that doesn't help lol

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