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(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.

Profile picture for nick52
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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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Glad to know!  Sugar is bad for me but after the NAET treatment I can tolerate it more without having lots of mucus. With that food, scent allergy treatment, it kind of désintoxication your body and you don&apos;t need to stop eating the food. Your body will

digest it much better. 

REPLY
Profile picture for nick52
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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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Does anyone drink tap water instead of distilled water?

REPLY
Profile picture for nick52
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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

What kind of antibiotic they gave you to treat pseudomonas

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Profile picture for nick52
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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

Ouf! That sound scary "Cavitary" I will read about it! Kay does anyone talk about back upper pain also. I also ask @windwalker about upper back pain. I wonder if that is due to lung issues. 

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nick52 | @nick52 | Sep 21, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
Profile picture for auntnanny @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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Windwalker 

Are you aware of the new probiotic made in Canada.  It is coconut Kefir. I bought a bottle but switch to Dr Ohhira&apos;s fermented professional probiotics. My family Dr make is own kefir for his family.  He is a Vietnamese .

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nick52 | @nick52 | Sep 21, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
Profile picture for ginak @ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

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The sputum test is telling  if you have an infection right! I had one done at it was negative

REPLY
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nick52 | @nick52 | Sep 21, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
Profile picture for ginak @ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

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Did your  Dr said that the MAC is there to stay all your life. That is what the nurse said yesterday. All the scars in the lung that isn&apos;t reversible right? 

REPLY
Profile picture for ling123
ling123 | @ling123 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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

@nick52 I always drink tap water. I don't think I got MAC from drinking tap water. I suspect I got it from the soil when I dug in the garden.

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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

 

 

OK So you started with Gluten.. That will be hard but I will give it a shot

Jo Ann

 

REPLY
Profile picture for nick52
nick52 | @nick52 | Sep 21, 2017
In reply to @suttonmac2009 "I started with 500 mg (each) of Clarithromycin twice a day and 400 mg(each) of Ethembutol..." + (show)
Profile picture for shelby @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

It was recommended that I drink no tab water. I ask the  Dr yesterday about pseudomonas and he said Pseudomonas is a bacteria in water. Do you know where you get pseudomonas? I had never heard about it. Me I had radiation. That could be the cause. I didn&apos;t

want to take radiation but my husband kind of insisted but I never took the Tamoxifen ( the anti estrogen.  I took Primerose Oil and still do. Did you had that bacteria?

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