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 | Dec 18, 2017

We gotta hope they keep looking for treatments.

REPLY
joan912 | @joan912 | Dec 19, 2017
In reply to @lindam272 "Katherine, We will all be praying for your quick recovery. I just recently began yoga and..." + (show)
@lindam272

Katherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.

I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.

Be well and remember you are loved!!

Linda

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Hello Linda, I've received several linked-in invitations. These don't seem to work.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 19, 2017
In reply to @lindam272 "Katherine, We will all be praying for your quick recovery. I just recently began yoga and..." + (show)
@lindam272

Katherine, We will all be praying for your quick recovery. I just recently began yoga and have been working out (weight training) since March. I was working out last summer but became so sick with MAC that I couldn't breathe well enough to continue until this past March. I can really tell the difference in my breathing since being at the gym. I hope that you find the same healing in your workouts.

I know that this couldn't have been an easy decision for you, and am grateful that you trust us to take care of the new people who join our group. We know the drill and will help the others that come along as well.

Be well and remember you are loved!!

Linda

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Hi Joan, The LinkedIn messages from Linda were sent in error. Please ignore.

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boomerexpert | @boomerexpert | Dec 19, 2017

Any trials for us are great news! Thanks, @heathert

REPLY
1 reply
unicorn | @unicorn | Dec 19, 2017
In reply to @boomerexpert "Any trials for us are great news! Thanks, @heathert" + (show)
@boomerexpert

Any trials for us are great news! Thanks, @heathert

Jump to this post

Yes the more the better, wish I could get in one

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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)
@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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@sophie1019, I hope that you are no longer drinking your tap water or showering in it (take a bath instead) Wisconsin has the most infected water in the country with MAC organisms. You can boil your tap water for ten minutes to make suitable drinking water. Be sure to turn up the temperature on your hot water tank to 130 or higher. Wisconsin is one of the hot spots in the nation for incidence of MAC.

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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)
@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 Terri, just wondering if you sent the doc from Vancouver's letter to Mayo and if they responded? I just feel worse and worse especially at night and feel I have to do something. Planning a trip to europe in May and worried I won't feel up to it. I'm wondering if any researchers ever contact you for people to staff their clinical trials. I just kind of feel like I am running out of time. It's such a wonderful time of the year with so much family around and all I want to do is go to bed and breathe under the covers, hurts less. Anyway, wah wah poor me...Is there any way to petition drug companies to do more nitric oxide tests...sorry, just rambling. Hope everyone is ok. xo

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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)
@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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@unicorn , No I have not forwarded that letter to the Mayo. You may re-type it and mail it to my doctor yourself and ask what he thinks. You could try mailing it to: Mayo Clinic Jacksonville, Attn: Dr. Jack Leventhal, 7th Floor Davis Building, Jacksonville, Fl. you will have to look up the zip code. I am sorry that you are feeling so badly still. You may want to look into seeing doctors at one of the Mayo clinics. I think that the one in Jacksonville is no longer accepting new patients.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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)
@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

@unicorn, Have you ever tried having bronchial washes done? I know of two people that that has helped them. It is a process of squirting saline into the lungs to wash out the infection and gunk. It is done with a bronchoscopy. You can Google this, learn more about it and ask your doctor about it.

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