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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!

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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.

Profile picture for unicorn
unicorn | @unicorn | Dec 20, 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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Never heard of it but will definitely request it. Thanks! xo

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Profile picture for tdrell
tdrell | @tdrell | Dec 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

sophie1019...windwalker is sooooo correct re Wisconsin and its MAC infections...l live in SE Wisconsin....It is considered along with florida Hawaii etc a hot spot...
l drink bottled spring water to avoid tap water....the pipes are full of the biofilms of MAC that are formed. l make my own ice out of the spring water....l do not drink water from hose in refrigerator or use its ice.tdrell

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Jo Ann K | @jkiemen | Dec 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

I also live in South East Wisconsin in Walworth County. Do you live near there? I have also heard from a Pulmonologist I went to this week for a second opinion that it is everywhere in Southeast Wisconsin. I heard that well water is better than city water. Is that what others have come to understand?

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Dec 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

Companies do have Compassionate use protocols. I think we could petition for that. I can't see how it would hurt to try any options

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Sophie | @sophie1019 | Dec 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

I live in milwaukee....

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Dec 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

We are in pretty close proximity. I am in Milwaukee at least every Friday for work and some weekends. I just went for another opinion with Dr Lipchik at Froedert. He seemed good and at least got some baseline labs on me, rechecked my Immune function which is a little low and VItamin D levels. He said that is the only supplement he would recommend to help immune function. I told him about the research I was doing on Nitric Oxide studies and will send him a copy of what I have found. 3 different companies. Maybe they could get involved with one. Do you like your MD's?

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Profile picture for tdrell
tdrell | @tdrell | Dec 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

Jkiemen and Sophie1019.... I live close to Milwaukee in West Bend.... my local ID And Pulmonologist are out of Froedert tdrell

REPLY
Profile picture for nick52
nick52 | @nick52 | Dec 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

According to Dr Balch in his book Nutritional Healing the best water is the distilled water. It might be worth research it!

REPLY
Profile picture for Sophie
Sophie | @sophie1019 | Dec 22, 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

I also go to fried tertiary
My pulmonarch doc is dr. Presberg. My infectious disease doc is Jane wainani. She is also at froedtert. I absolutely love both of my docs....

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Profile picture for judyem
judyem | @judyem | Dec 22, 2017

i have been on the triple ABT therapy for 14 months now for MAC/bronchiectasis. In the last a couple of months I developed a rash and the itchiness is driving me crazy. I went to 2 dermatologists, an allergist/immunologist and to my pulmonologist. I had 2 biopsies, and did a lot of blood work but they could not find a cause of the rash. I tried Anti Itch Cream, a cream with steroids in it, prednisone, etc and it still persists. The dermatologist thought it might be medication-related as did the allergist. My allergist took the lead and told me to eliminate one of the antibiotics (Rifamkin) as 66% of people have the side effect of a rash. Then if the rash does NOT go away, he will eliminate the Ethambutol to see if that is the cause. I am hesitant to do so. I had him call my pulmonologist to discuss but he is on vacation. The allergist said to me that I have been on the treatment for 14 months. Who really knows if 14 months is not as effective as 18 months. They have not done more recent research to know that. So.. I am a little conflicted. I did not take the Rifamkin last night, as I can't continue on like this either. I live in New York and believe I have an excellent medical team on Long Island. Any suggestions?

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