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.

Flib | @flib | Aug 28, 2018
In reply to @alleycatkate "Question for anyone....I just got my first pneumonia shot and have to wait a year for..." + (show)
@alleycatkate

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.

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I've been getting them regularly for several years. I did get pneumonia once. I think they are worthwhile. I had no side effects from the shot.

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alleycatkate | @alleycatkate | Aug 28, 2018
In reply to @ling123 "@alleycatkate I have received pneumococcal vaccine and have not had pneumonia. I don't think I've ever..." + (show)
@ling123

@alleycatkate I have received pneumococcal vaccine and have not had pneumonia. I don't think I've ever had pneumonia. But my doctor said I should get the vaccination due to my age (65).

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@ling123 ..Thanks, Ling for your response...I hope you do not ever get it!

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alleycatkate | @alleycatkate | Aug 28, 2018
In reply to @beverly1945 "I heard that there is another new one" + (show)
@beverly1945

I heard that there is another new one

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@beverly1945 ....Hi Beverly, Do you know when it came out. Is it the first or second shot....or both? I will have to ask my GP if she knows. Thanks for your info.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 28, 2018
In reply to @soflo "@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not..." + (show)
@soflo

@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not happy that I'm having to go back and fourth with the insurance company. My doctor is having a phone conference with them tomorrow on my behalf. Either way I will be going to Mayo. I saw that Kate shared her news with you about her appointment with Mayo in October, that's awesome! I don't post much but I do read all of the posts ;). I will stay in touch with you publicly and share. I don't mind helping others so that they can get into Mayo as well. Thanks again for always staying in touch. Take care of yourself....hugs xx Dee

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@soflo Hi Dee! Great hearing from you. Yeah, keep fighting for your right to great healthcare at Mayo. I think they will cave eventually. Are you feeling alright?

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Margie E | @margiebanks | Aug 28, 2018
In reply to @sueinmn "My bilateral hip implants were done over 10 years ago and I still take antibiotics before..." + (show)
@sueinmn

My bilateral hip implants were done over 10 years ago and I still take antibiotics before appointments. My old dentist said the same as yours, however my current dentist & my current Ortho doc agree there is SOME risk. The dentist REQUIRES me to premedicate, or they won't see me. When they see I am further compromised by bronchiectasis & MAC, I'm sure they will be even more insistent. Talk to your Ortho, pulmonologist or primary doc if the dentist doesn't want to prescribe.

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@sueinmn yes i should take the antibiotics, and I will from now on.

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beverly1945 | @beverly1945 | Aug 28, 2018

No I actually don’t but I think about 2 mos ago I live in Flo so maybe it’s there first ask your Dr feel good

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beverly1945 | @beverly1945 | Aug 28, 2018

No maybe 2-3 mos ago I first heard about it in Florida ck with your Dr .Feel good

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heathert | @heathert | Aug 30, 2018

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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1 reply
honeybtorres | @honeybtorres | Sep 1, 2018

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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2 replies
boomerexpert | @boomerexpert | Sep 2, 2018

@honeybtorres I recommend you get a second and even third opinion...primarily on the treatment course....for MAC there's many alternatives; I think you'll find there may be for latent TB as well.

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