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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2019
In reply to @sandykayhud "Thanks for the info. I am hesitant about taking the Arikayce because I am already battling..." + (show)
@sandykayhud

Thanks for the info. I am hesitant about taking the Arikayce because I am already battling voice problems as a result of radiation damage to my esophagus.
Let me know the name of the other med if you find out. The big 3 for 2 years did get rid of the MAC for a period of time but has returned. Your info has helped me alot...thanks and God bless you in your treatments.

Jump to this post

@sandykayhud Hi there. Your story of having the mac return is a common one. I have tested negative for mac since 2014. I have been on monthly maintenance dose antibiotics ever since to keep it from coming back. The return of mac or pseudomonas are more probable if you have bronchiectasis. Do you also have bronchiectasis?

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 8, 2019
In reply to @anniepie "Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot..." + (show)
@anniepie

Hi friends, here's some good news: This month (June 2019) the Gates Foundation licensed a lot of further clinical testing of SPR720 for TB. http://www.tbonline.info/posts/2019/6/23/spero-therapeutics-announces-collaboration-bill-me.

SPR720 has also had demonstrated research success (in vitro and in vivo) with NTMs . It's been shown to be safe as well as clinically effective against MAC/MAI and Abscessus. https://sperotherapeutics.com/pipeline/spr720-non-tuberculosis-mycobacterium/.

So we might finally see some new drug action a lot faster than we would have if left to Big Pharma alone!
Hugs to all and all the best
Annie

Jump to this post

@anniepie Thanks Annie!

REPLY
ling123 | @ling123 | Jul 8, 2019
In reply to @windwalker "@pfist & @ling123 Hi Ling! Thank you for posting this link. I found the article interesting...." + (show)
@windwalker

@pfist & @ling123 Hi Ling! Thank you for posting this link. I found the article interesting. I hope that my long term use of cipo doesn't end up harming me. I do want to point out that the article mentions several times that the adverse side effects are RARE. It also says scientists BELIEVE that serious adverse side effects were caused by the flueroquilones (cipro, levaquin, etc.) 'Believe' and actual case studies are two different things. There are doctors out there over-prescribing with these drugs, but any good doctor knows when the risk outweighs the benefits. I feel like I'd rather take my chances with cipro than have mac continue to eat away my lungs. I do want to look into the hidden side effects of these antibiotics. I have noticed a lot of leg cramping and almost total loss of hand strength. I just chalked it up to age (60 yrs) and cramping due to dehydration.

Jump to this post

@windwalker Terri, I agree with you. I can't think of a drug that does not have any side effects. Once ingested they are foreign substance in our body. But we absolutely need to weigh the pros and cons and try not to scare ourselves into quitting to fight the diseases that can have debilitating effects on our lives. All we can really do is to be vigilant and be educated so we can be one step ahead of adversities. After reading about the side effects of Ibuprofen, I was very alarmed and almost decided to completely stop using it. But after some research, I realized that just about all the pain killers have similar side effects. Unless I completely stop using it for the rest of my life, I will have to deal with such side effects. I know that as we are aging, it is not practical to make a decision like that. All I can do is try to cut back to the least amount that I need and bear the risk for it.

REPLY
1 reply
pfists | @pfists | Jul 8, 2019
In reply to @windwalker "@pfist & @ling123 Hi Ling! Thank you for posting this link. I found the article interesting...." + (show)
@windwalker

@pfist & @ling123 Hi Ling! Thank you for posting this link. I found the article interesting. I hope that my long term use of cipo doesn't end up harming me. I do want to point out that the article mentions several times that the adverse side effects are RARE. It also says scientists BELIEVE that serious adverse side effects were caused by the flueroquilones (cipro, levaquin, etc.) 'Believe' and actual case studies are two different things. There are doctors out there over-prescribing with these drugs, but any good doctor knows when the risk outweighs the benefits. I feel like I'd rather take my chances with cipro than have mac continue to eat away my lungs. I do want to look into the hidden side effects of these antibiotics. I have noticed a lot of leg cramping and almost total loss of hand strength. I just chalked it up to age (60 yrs) and cramping due to dehydration.

Jump to this post

@windwalker
@ling123
Yes Terri we just need to be informed and then decide if the benefit outweighs the risk of any drug we take. It did state that most adverse side effects don't ever get reported at all though. I know my good friend took cipro for uti and afterwards had several tears in her leg cartridge. I did mention it to her that it could of possibly be due to the cipro.
I know floroquines work really good on pseudomonas where many other drugs don't. I just hope they work on finding antibiotcs that work but don't have some of these side effects.
I have taken cipro in the past also and did feel achy I don't take it now. When I get pseudomonas they do a susceptibility test on it and there has been quite a few antibiotics that show they will work on it and we go with one of those.
Just want people to be informed and it may never effects one person where it would another. We're all so different one person's medicine can be another persons poison.
Take care Terri... I'm glad your doing well!

REPLY
sandykayhud | @sandykayhud | Jul 8, 2019
In reply to @windwalker "@sandykayhud Hi there. Your story of having the mac return is a common one. I have..." + (show)
@windwalker

@sandykayhud Hi there. Your story of having the mac return is a common one. I have tested negative for mac since 2014. I have been on monthly maintenance dose antibiotics ever since to keep it from coming back. The return of mac or pseudomonas are more probable if you have bronchiectasis. Do you also have bronchiectasis?

Jump to this post

Yes, I was diagnosed with Bronchiectasis first.

REPLY
sandykayhud | @sandykayhud | Jul 8, 2019
In reply to @windwalker "@sandykayhud Hi there. Your story of having the mac return is a common one. I have..." + (show)
@windwalker

@sandykayhud Hi there. Your story of having the mac return is a common one. I have tested negative for mac since 2014. I have been on monthly maintenance dose antibiotics ever since to keep it from coming back. The return of mac or pseudomonas are more probable if you have bronchiectasis. Do you also have bronchiectasis?

Jump to this post

yes, i was diagnosed with bronchiectasis first

REPLY
Jennifer | @megan123 | Jul 13, 2019
In reply to @pfists "@ling123 Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe..." + (show)
@pfists

@ling123
Yes ciprofloxin and leviquin is two I won't take because of the dangers. I believe it's the fluoride in it that makes it so toxic. I suppose that's the part that makes it effective against pseudomononas and mycobacteria. They need to come up with better alternative drugs.
Shari

Jump to this post

Hi pfists...sorry to interrupt...I too am dealing with psedomonas. I presently nebulize Co,istin every other month at 150 ml...75 ml x2 a day...keeps it at bay.. what r u taking to keep psedomonas at bay?? B

REPLY
pfists | @pfists | Jul 13, 2019

@megan123
Hi
I have used toby nebs usually.
They have done suseptibility tests too and have used a few other things that worked like cefuoxime or augmentin. I think that if you use the same thing a lot you run the chance of making any particular bacteria resistant to it.
I use to use cipro but won't now because of side effects. Tobys have never bothers me and works well except it cost 70.00 a month for me.
Anyway hope this helps navigate the water for you!
Take care
Shari

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 13, 2019
In reply to @ling123 "@windwalker Terri, I agree with you. I can't think of a drug that does not have..." + (show)
@ling123

@windwalker Terri, I agree with you. I can't think of a drug that does not have any side effects. Once ingested they are foreign substance in our body. But we absolutely need to weigh the pros and cons and try not to scare ourselves into quitting to fight the diseases that can have debilitating effects on our lives. All we can really do is to be vigilant and be educated so we can be one step ahead of adversities. After reading about the side effects of Ibuprofen, I was very alarmed and almost decided to completely stop using it. But after some research, I realized that just about all the pain killers have similar side effects. Unless I completely stop using it for the rest of my life, I will have to deal with such side effects. I know that as we are aging, it is not practical to make a decision like that. All I can do is try to cut back to the least amount that I need and bear the risk for it.

Jump to this post

I hear ya, @ling. I us

REPLY
sandykayhud | @sandykayhud | Jul 27, 2019
In reply to @suzyqueue "The hoarsness lets up after a couple/few weeks. Also it helps to do the treatment before..." + (show)
@suzyqueue

The hoarsness lets up after a couple/few weeks. Also it helps to do the treatment before bed immediately after your albuterol treatment. That way your vocal chords are resting and you aren't using them. So far hoarsness isn't a side effect I'd be concerned about with the success this treatment has had. I was hoarse for a couple weeks but now I'm not.

Jump to this post

Hi: I have done 5 treatments with the Arikayce. I have completely lost my voice and can not speak above a whisper. My dr wants me to do the treatments in the morning. Did you discontinue the Arikayce for a period of time or did you keep taking it even during the time of your voice problems. I have not had any other major effects, some coughing and tinge of blood but nothing I can't deal with. I am not doing any other treatments except Breo inhalation. Thanks for any insight.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.