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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2018
In reply to @honeybtorres "Hello All- About a month ago, while getting my testing complete to begin Nursing Clinicals, my..." + (show)
@honeybtorres

Hello All-
About a month ago, while getting my testing complete to begin Nursing Clinicals, my TB titer cane back positive for latent TB. I was immediately called in for an xray, which came back clear, but was told i needed a 3moth course of meds! 9 pills(3of one, and 6 of another) once weekly. I was told side effects would be slim to none.
Well thats a gross understatement. I have been severly fatigued, emotional, nauseated, and have had no appetite which has caused weightloss. Is this normal? Not only this but my anxiety and panic attacks have been at an all time high!
And not only do i have latent, but my 14 yr old daughter does too! Shes on her secomd week of tge nine pill regimine, and seems good so far.
I was told by my primary care to stop my course with 6 weeks left and they set me up with an appt with an infectious disease specialist. Im sick amd discouraged. Any advice for a Poor Honey B ?

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@honeybtorres Hello Honey B and welcome to our group. I am with @boomerexpert on getting another opinion. I have never heard of getting prescribed powerful antibiotics just on titer info. I am no medical expert, so I could be wrong. I do know that when mac (not TB) is first gtown in a petrie dish; that it looks like TB, but after 8 wks it changes in appearance and is then diagnosed as mac. Were you or are you in a country outside of the U.S. where you would have exposure to tb?

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Jo Ann K | @jkiemen | Sep 4, 2018

@honeybtorres I would definitely be seeing a pulmonologist and Infectious Disease Specialist. What meds were you getting

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beverly1945 | @beverly1945 | Sep 4, 2018
In reply to @ginak "@vestafit Hi, I’m in NYC also. What Dr were you seeing? I see Dr. Kamelhar. He..." + (show)
@ginak

@vestafit Hi, I’m in NYC also. What Dr were you seeing? I see Dr. Kamelhar. He hasn’t put me on any antibiotics either. He says that’s the last resort if we can’t control it with lung clearance exercises. I take a good probiotic and Isotonix. I also have bronchiectasis, which many others on this sight have, and acid reflux. Where do you go to the NTM meetings?
Gina K

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I see a Pulmonoligist at NYU Dr Adams I adore him I worked at NYU are you going on Oct 31 to the conference about NTM .What are the exersizes ?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018
In reply to @beverly1945 "I see a Pulmonoligist at NYU Dr Adams I adore him I worked at NYU are..." + (show)
@beverly1945

I see a Pulmonoligist at NYU Dr Adams I adore him I worked at NYU are you going on Oct 31 to the conference about NTM .What are the exersizes ?

Jump to this post

@beverly1945 Hi Beverly. I just want to remind you to type in an @name when you reply to a post. Look at how I started my text to you here. You will notice that others are doing it and the @name appears in blue. This will connect your comment to the conversation and your reply will reach the person you are talking to. Thank you, and I hope you are feeling alright tonight.

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1 reply
beverly1945 | @beverly1945 | Sep 4, 2018
In reply to @windwalker "@beverly1945 Hi Beverly. I just want to remind you to type in an @name when you..." + (show)
@windwalker

@beverly1945 Hi Beverly. I just want to remind you to type in an @name when you reply to a post. Look at how I started my text to you here. You will notice that others are doing it and the @name appears in blue. This will connect your comment to the conversation and your reply will reach the person you are talking to. Thank you, and I hope you are feeling alright tonight.

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@windwalker888 like this ?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018
In reply to @beverly1945 "@windwalker888 like this ?" + (show)
@beverly1945

@windwalker888 like this ?

Jump to this post

@beverly1945 Yes! Like that.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018
In reply to @heathert "Hi all, I just found this article about garlic killing bacteria in the lungs. Very Interesting,..." + (show)
@heathert

Hi all, I just found this article about garlic killing bacteria in the lungs. Very Interesting, https://www.ncbi.nlm.nih.gov/pubmed/29023413

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@heathert I too had read something recently about the antibacterial properties of garlic. I bought a bottle of garlic tablets two weeks ago, as I would have trouble fitting it into my daily diet. I did roast a bunch of cloves last week with a roasted chicken. Man! They were good!

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1 reply
heathert | @heathert | Sep 5, 2018
In reply to @windwalker "@heathert I too had read something recently about the antibacterial properties of garlic. I bought a..." + (show)
@windwalker

@heathert I too had read something recently about the antibacterial properties of garlic. I bought a bottle of garlic tablets two weeks ago, as I would have trouble fitting it into my daily diet. I did roast a bunch of cloves last week with a roasted chicken. Man! They were good!

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@windwalker I have read that you should eat it raw but squashed producing Allicin. Lets just say that I often smell of garlic now.

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1 reply
heathert | @heathert | Sep 5, 2018

Hi all I have just started inhaling saline 7%. I have been told to use 4ml, nearly a teaspoon, saline which only takes a few minutes to inhale. Is it the same for all of you on saline?

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 5, 2018

@heathert Yes, mine is 4ml. I am about to do mine!

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