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 | May 30, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@chinasmom Gosh, Becky, it just doesn't seem fair for you to have NTM and worry about HD coming on. We are here for you. !! You mentioned Katemn being proud of us.....I feel that she is. It makes me happy when I sign onto this site and her face is the first thing that I see. I hope they never take that down. She put her heart and soul into us. SHE helped forge the bonds that we have now. It is up to us to carry that forward.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 30, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@chinasmom, Hi, Just wanted to add that they usually make you wait 24 months before the Medicare kicks in if you are under age 65. And as far applying for Disability; build a strong case with medical records. I was approved on the first go at it because they did a spirometric breathing test and I fell within the range. Filing for disability is difficult for illnesses that are hard to provide hard evidence that you qualify. Some of the hardest to prove are mental illness, back issues, pain, autoimmune, etc. Breathing is measurable. They have a scale they use that is black & white. You either have low lung function or you don't. I got my disability in 2007. At that time, my measured lung function was right on the cusp of being eligible. Over the years it has since dropped, but I am sure I have lasted longer by being on disability. I know that you don't need this info personally. I am only adding this for others who may need it.

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lindam272 | @lindam272 | May 30, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Terri, Do you remember what the eligible function scale was? Linda

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nick52 | @nick52 | May 30, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@windwalker good info Terri!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 30, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@lindam272 No, Linda, I do not. I am sorry, but that was too many years ago.

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Jane S. Brown | @macjane | May 31, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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You always have great answers. I feel guilty for my depression when I see how positive others can be. Jane Brown

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Jo Ann K | @jkiemen | May 31, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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I feel your pain. I am right there with you.

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boomerexpert | @boomerexpert | May 31, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@macjane that's the depression talking...don't listen...

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 31, 2018
In reply to @suzie2017 "What does MAC infection do to the body if the patient does not seek treatment?" + (show)
@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@macjane, Please don't feel guilty about being depressed. You are entitled to your feelings. It may be that you are still mourning the past, when you weren't fighting disease. I am pretty sure that all of us have felt the same way at some point, and still do. It gets old trying to fight a tenacious disease. It absolutely wears you down. All we can do is hang in there and keep fighting. Don't give up. I am proof that one can get better to a point that you can enjoy life again. Remember, five years ago I was told to plan for a double lung transplant. You should see me now!

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toni68 | @toni68 | May 31, 2018
In reply to @suzie2017 "I took my husband to the Infectious Disease Doctor yesterday. He said there is no way..." + (show)
@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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@nick52 I eat all of these foods,no wonder why I feel like I'm so very sick 24/7 Thank You Toni

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