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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

nick52 | @nick52 | Dec 31, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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Sorry boomexpert but I can’t find that envelope icon lol

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 31, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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@nick52, Here’s how to send a private message:
1. Click on the member’s name.
2. Click on Send Private Message.
3. Write your message.
4. Click Send message.

Bbonne année et bonne santé pour 2018!

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irene5 Irene Estes | @irene5 | Dec 31, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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Ditto that to everyone! Maybe this time next year there will be a more tolerable and permanent cure for us!

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heathert | @heathert | Dec 31, 2017
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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Oh yes please!

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boomerexpert | @boomerexpert | Jan 1, 2018
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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Thanks, C! Also the envelope icon is to the right of your pic at the top of the page.

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boomerexpert | @boomerexpert | Jan 1, 2018
In reply to @windwalker "@Judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If..." + (show)
@windwalker

@judyem, Hello Judy. I have no answers on your rash. Hopefully it will subside soon. If it does persist, you may want to have it biopsied for MAC. In rare instances, it can spread to your skin. I don't mean to alarm you, it most likely is not that, but you should be aware. I feel for you, there is nothing worse than persistant itching. I got terrible hives from a sulpha medication once and thought I would go insane from the constant, intense itching over every square inch of my body. You can try taking a bath with one cup vinegar and one cup Epsom salt. Soak awhile. Those two things together draw toxins out of your body and soothe the skin. I do that occasionally; it is very refreshing if nothing else. I hope that you can still manage to enjoy the holidays, BIG HUG!

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If we keep pushing for it!

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unicorn | @unicorn | Jan 2, 2018
In reply to @heathert "Yay another trial https://cysticfibrosisnewstoday.com/2017/12/12/arch-biopartners-readies-ab569-potential-treatment-for-cf-copd-lung-infections-for-phase-1-trial/" + (show)

About AIT Therapeutics Inc.
AIT Therapeutics Inc. is a clinical-stage biopharmaceutical company using nitric oxide (NO) to treat serious lung infections and pulmonary hypertension. The Company is currently applying its therapeutic expertise to treat lower respiratory tract infections that are not effectively addressed with current standards of care. AIT Therapeutics is advancing its revolutionary NO respiratory targeted system in clinical trials for the treatment of bronchiolitis and for nontuberculous mycobacteria (NTM). For more information, visit http://www.AIT-Pharm.com.
JUST SENT TO ME FROM THE PEOPLE RUNNING CLINICAL TRIAL IN CANADA

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Jo Ann K | @jkiemen | Jan 2, 2018

I have been watching this site. We need to get some of us in that Clinical Trial. We need to get our MD's to try to be a center for the study. https://clinicaltrials.gov/

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1 reply
unicorn | @unicorn | Jan 2, 2018

yes we absolutely do! I wonder if there is a way to let these guys see our forum feed so they know there are ready and willing people to house the trials! Maybe even compassionate use if some of us are really doing poorly. like me! I think we should be more aggressive in hooking up with them but don't know how. xo Christa

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1 reply
irene5 Irene Estes | @irene5 | Jan 2, 2018
In reply to @unicorn "yes we absolutely do! I wonder if there is a way to let these guys see..." + (show)
@unicorn

yes we absolutely do! I wonder if there is a way to let these guys see our forum feed so they know there are ready and willing people to house the trials! Maybe even compassionate use if some of us are really doing poorly. like me! I think we should be more aggressive in hooking up with them but don't know how. xo Christa

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And me! Sign me up thank you!

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