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.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 31, 2017
In reply to @lindam272 "This came across my email this morning from Cambridge Mask Co. Right now they are raising..." + (show)
@lindam272

This came across my email this morning from Cambridge Mask Co. Right now they are raising money for this new concept, but I believe you can also sign up to receive a mask with the smart valve once they have them in production. Just an FYI for anyone who may be interested. Linda

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Hi Linda,
I removed that fundraising link from the above post. People can go to the information site https://cambridgemask.com/ to get more information about the mask. However fundraising websites are not allowed on Connect as it contravenes the Terms of Use https://connect.mayoclinic.org/terms-of-use/

I know that was not your intent and no harm done. Good opportunity to demonstrate how we keep the community safe from solicitations and commercial posts however. So thank you 🙂

REPLY
lindam272 | @lindam272 | May 31, 2017
In reply to @lindam272 "This came across my email this morning from Cambridge Mask Co. Right now they are raising..." + (show)
@lindam272

This came across my email this morning from Cambridge Mask Co. Right now they are raising money for this new concept, but I believe you can also sign up to receive a mask with the smart valve once they have them in production. Just an FYI for anyone who may be interested. Linda

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Thanks, Colleen. Never gave it a thought. Linda

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terryb1 | @128128terry11t | May 31, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
@cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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Your visualization technique of boxing with the bacteria and winning is far from silly. Bernie Siegal wrote about it in "Love, Medicine and Miracles". A technique that he recommends is fighting a la Ms. Packman and actually visualizing the "bugs" lessening in number and being destroyed. He cautioned that if someone does this and does not get better never to put the blame on themselves or feel "less than". So if it works, great ... but if it doesn't it is certainly not the person's fault. If anyone is interested, I believe that Siegal's book is still available. Katherine: I know that you are reading all the posts-- just wanted to say that you and your husband are in my prayers as so many people have posted. Terry

REPLY
HigbeeHugs | @higbeehugs | May 31, 2017
In reply to @jentaylor "Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2..." + (show)
@jentaylor

Hi all, it's Jen Taylor, I haven't been in touch with you via "connect" for 2 months. I was seen at Mayo in Minnesota over a 2 week period. I received so much info from all of the evaluation. I have been overwhelmed & scared & I have been trying to process all of this on my own. It hasn't been going to great so I'm trying to reach out & thought what a better group to talk to than others who are going through similar life experiences. After have a positive MAC culture from my bronchial washings, I was told that I had MAC & need to be treated. Previously (Sept. 2016) they diagnosed me with bronchiectasis. Nothing was seen on my CT scan or X-ray that showed the colonies seen from MAC. One of the big reasons I was going to Mayo was to get an expert opinion from Dr. Askamit. After Dr. Askamit read through my many, many, many records over a course of 10 years, since I first got sick, he concluded that at this time I may have MAC but it should not be treated at this time because it does not appear on a CAT scan. I must tell you that I was shocked by his response as it was completely different than my pulmonologist locally. And to be honest, I seem to have met the criteria to be considered to have MAC & to start treatment. I have many underlying illnesses & it's so hard to sort out what is what. Dr. Aksamit said to wait until it is seen on a CT scan. I have very mixed feelings about this. I am concerned that I should just wait until I become more infected to start treatment. Personally, I'd rather treat it BEFORE it gets worse. I guess I'm the only one who things that. My local pulmonologist changed his mind & decided not to start treatment at this time. Don't get me wrong, I do NOT want take all of these meds that can cause such grief & danger!!! I also don't want to just sit around & wait for things to get worse!!! Am I wrong in thinking that?? I value your opinion. Oh, and I have had the bronchiectasis diagnosis since Sept 2007 based on CT scan but now, when Dr. Askamit looked at a different CT scan, he said he didn't see that. I'm SO confused. I know one thing to be true...I'm in a mess of a health situation with multi system dysfunctional & disease. I am sick every day of my life for 10 years now & without an underlying diaganosis of what disease I have in the lungs. They said I would not make past 2 years but here I am, 10 years later, alive & trying my absolute best to lead as much of a normal life as possible...mostly for my family. I'm back to a point where I am requiring supplemental oxygen again. I had been able to breath on my own for the past 3 years. What changed? We don't know. I go into respiratory failure several times a year resulting in hospitalizations. We still can't answer the question of why my lungs don't convert oxygen from the air I breath in??? Anyway, I apologize for rambling on. I have been so withdrawn & sad, scared & lonely since receiving all of this new information. I also learned I have stage 1 heart failure & other metabolic syndrome that leaves me as the "perfect storm for a cardiac event" as the physician stated it. I ended up at Johns Hopkins a couple weeks ago with an excellent cardiologist who is trying to help my sort things out. My weight is a contributing factor to my alveolib hypoventilation &
We discussed having the stomach sleeve procedure to help me loose weight. There is so much on my mind & I apologize that I just rambeled on without even diving the long note into paragraphs!!! That's just how my mind has been lately. I am in NO way trying to ask for self-pity...I'm just trying to get through my reality of day to day life the best that I can & with the most quality that I can. I'm just so confused right now. Oh, I had another bronch done on Wed. & we sent the washings for culture & this will probably be the ultimate testing to see if the washing show positive for MAC. We won't know for 6 weeks! Again, I welcome your feedback... thanks for taking the time to read this!

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Thank you for your posts. I have found them very helpful following along in this conversation.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 31, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
@cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

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That is good news indeed.
 

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 31, 2017
In reply to @jennifernicole "Many of the people posting on here seem to know more that some of the doctors..." + (show)
@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don't know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI ...

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Jen, I was a little self concious of wearing my oxygen at the gym. I do a
one hour gentle arobics class. Everyone, including me are used to it now. No big
deal.
 

REPLY
boomerexpert | @boomerexpert | May 31, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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I asked about peroxide on a NJ sponsored webinar...was told no research has been done to determine its efficacy for killing mycobacteria...doesn't mean it won't work, simply that we don't know for sure, and if so, at what concentration,

REPLY
cila | @cila | May 31, 2017
In reply to @tay4rake "Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they..." + (show)
@tay4rake

Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine

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Thanks Elaine for the info. I have got it yet, they supposed to mail it to me. I hope it will work for me too. If its very expensive I don't know how much my insurance will cover. Thanks again. Cila

REPLY
cila | @cila | May 31, 2017
In reply to @cila "Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need..." + (show)
@cila

Hello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.

Jump to this post

I really appreciate the information Katherine, I need to get the nebulizer and learn to clean it just like you said. Maybe get the Reusable one, like you said get 7 so I don't get so stress out. Thank you so much and get well. Blessing Cila

REPLY
Paula_MAC-2007 | @Paula_MAC2007 | May 31, 2017
In reply to @jennifernicole "Many of the people posting on here seem to know more that some of the doctors..." + (show)
@jennifernicole

Many of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don't know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI ...

Jump to this post

@jentaylor,
Bravo to you for taking a 10 min slow paced walk around the block with my daughter, Emma & our dog!!!! What a great start! For 8 years after being diagnosed with NTM, I wore a Pedometer which recorded my steps each day (I didn't care about all the other stuff the pedometer could record). After about a year, I challenged myself to reach 10,000 steps a day. Sometimes I made it, sometimes not.

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