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!

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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:
- 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.

Jo Ann K | @jkiemen | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

 

REPLY
Jo Ann K | @jkiemen | Sep 20, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@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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Jo Ann K | @jkiemen | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

Jump to this post

 

 

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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unicorn | @unicorn | Sep 20, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@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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nick52 | @nick52 | Sep 20, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@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.....

Jump to this post

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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nick52 | @nick52 | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

Jump to this post

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&apos;s fermented Probiotics. You can google it on the web.

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

REPLY
nick52 | @nick52 | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

Jump to this post

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.

REPLY
nick52 | @nick52 | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

Jump to this post

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

REPLY
nick52 | @nick52 | Sep 20, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
@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

Jump to this post

Kay,

What "cavities" you are talking about. My mother tongue is french that doesn&apos;t help lol

REPLY
nick52 | @nick52 | Sep 20, 2017
In reply to @maryjo2sell "Hi Terri- Just hard to find time to do everything lately. Seems by the time you..." + (show)
@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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