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.

Jennifer | @megan123 | Sep 9, 2018
In reply to @oldkarl "@windwalker Hi, Terri. If I am reading the signs right, not well. ARCI.org has an android..." + (show)
@oldkarl

@windwalker Hi, Terri. If I am reading the signs right, not well. ARCI.org has an android app that gives a prognosis based on some of your lab work, including Troponin, sFLC, & others. If it is accurate, I should make it into some time next year. Then the fibrils will invade and cut off the sensory-motor nerves between the brain and heart. I am already started into dementia. But Oh, well. That's the way it works.

Jump to this post

@oldkarl....❤️

REPLY
auntnanny | @auntnanny | Sep 9, 2018
In reply to @america "Hi Terri, I just got back from Mayo Clinic! It was a great experience to meet..." + (show)
@america

Hi Terri, I just got back from Mayo Clinic! It was a great experience to meet the doctors there. I am so amazed at the knowledge of the doctors at Mayo. I now know more of about what’s living in my lungs that the last four years. Love my pulmonologist at Mayo!!! Thanks Terri. I was tested by sputum and blood, and found out that.... I have Mac, bronchiectasis and pseudomonas. I was never told before that I had pseudo even though I did a bronc 4 years ago no one told me. So I have this and it’s fast growing bacteria. But I got the best doctors now. I am not taking any big 3 again but I’ll be using. Saline! The acapella and inhalation Tobramycin! I feel really good about the treatment plan and I see him in 6 months. I feel blessed and I am very grateful for all the help guys. Rita.

Jump to this post

@america.....…….. I felt excited just reading your post. I, too, am with Mayo's in Rochester -- I don't have MAC, but I do have bronchiectasis. I suppose it's just a matter of time. They really feel saline is important and I, too, think it's a big help. I have Dr. Moua in Rochester (and I think he's so very good). If I write on my portal to him, he answers very quickly.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 9, 2018
In reply to @america "Hi Terri, I just got back from Mayo Clinic! It was a great experience to meet..." + (show)
@america

Hi Terri, I just got back from Mayo Clinic! It was a great experience to meet the doctors there. I am so amazed at the knowledge of the doctors at Mayo. I now know more of about what’s living in my lungs that the last four years. Love my pulmonologist at Mayo!!! Thanks Terri. I was tested by sputum and blood, and found out that.... I have Mac, bronchiectasis and pseudomonas. I was never told before that I had pseudo even though I did a bronc 4 years ago no one told me. So I have this and it’s fast growing bacteria. But I got the best doctors now. I am not taking any big 3 again but I’ll be using. Saline! The acapella and inhalation Tobramycin! I feel really good about the treatment plan and I see him in 6 months. I feel blessed and I am very grateful for all the help guys. Rita.

Jump to this post

@america Rita, I am delighted that you had such a good experience at Mayo. @suzie2017 please see this testimony (this is why I brag on Mayo so much). Rita, chances are you did not have the pseudomonas 4 yrs ago. That is something that can come on out of nowhere. The toby should knock that out in 30 days. That is what I am on every other month. I bet you will be feeling tons better very soon. Hugs!

REPLY
oldkarl | @oldkarl | Sep 9, 2018
In reply to @windwalker "@oldkarl Karl, I am so sorry about your prognosis. Do you have a good support system..." + (show)
@windwalker

@oldkarl Karl, I am so sorry about your prognosis. Do you have a good support system as in family and friends?

Jump to this post

@windwalker Sure do have a good support system. Except for doctors who are either lazy or afraid of strange diseases.

REPLY
1 reply
heathert | @heathert | Sep 9, 2018
In reply to @megan123 "@heathert...hi there...can u tell me the name of your nebulizer...mine is a PARI, but has tubing...hard..." + (show)
@megan123

@heathert...hi there...can u tell me the name of your nebulizer...mine is a PARI, but has tubing...hard to clean....tks

Jump to this post

@megan123 Hi mine is a pari eflow, all you need to clean is the mouthpiece which comes to pieces, it is a great machine and I would recommend it.

REPLY
oldkarl | @oldkarl | Sep 9, 2018
In reply to @alleycatkate "@oldkarl ... Oh God, I am so sorry to hear your news, Karl. It is sobering...." + (show)
@alleycatkate

@oldkarl ... Oh God, I am so sorry to hear your news, Karl. It is sobering. I will pray for you and hope that soon there will be meds that can help you. The link you posted on new meds does not open, so I can't see what is in the works. Are there any upcoming drug trials that you can get involved with? I hope you are not in pain. Kate

Jump to this post

@alleycatkate Sorry. That link is for my own story, available for anyone, https://bit.Ly/1w7j4j8 in the Amyloid folder. Some of the best links for pharmas or in that paper, but there are many more. Mayo, of course. Alnylam. Pfizer. amyloidosisfdn.org. ARCI.org. Helsinki University. Stanford.edu. TheBindingssite.com

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 9, 2018
In reply to @oldkarl "@alleycatkate Sorry. That link is for my own story, available for anyone, https://bit.Ly/1w7j4j8 in the Amyloid..." + (show)
@oldkarl

@alleycatkate Sorry. That link is for my own story, available for anyone, https://bit.Ly/1w7j4j8 in the Amyloid folder. Some of the best links for pharmas or in that paper, but there are many more. Mayo, of course. Alnylam. Pfizer. amyloidosisfdn.org. ARCI.org. Helsinki University. Stanford.edu. TheBindingssite.com

Jump to this post

@oldkarl I can't stop thinking about you.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 9, 2018
In reply to @oldkarl "@windwalker Sure do have a good support system. Except for doctors who are either lazy or..." + (show)
@oldkarl

@windwalker Sure do have a good support system. Except for doctors who are either lazy or afraid of strange diseases.

Jump to this post

@oldkarl I am so glad you have good support around you. Have you been to Mayo Clinic?

REPLY
heathert | @heathert | Sep 9, 2018
In reply to @oldkarl "@alleycatkate Yes, i have the whole business, apparently. We are pretty certain the name of my..." + (show)
@oldkarl

@alleycatkate Yes, i have the whole business, apparently. We are pretty certain the name of my dyscrasia is Gelsolin, or some other mutation very close, because I have the "amorphous white matter in your (my) cerebral cortex.) My kidneys have not functioned properly for several years. My liver, which makes the stuff, is in stage 4 fibrosis. and on and on. Pancreas thyroid, prostate, lungs, blood vessels, eyes, skin. The fibrils have invaded almost every tissue from my brain to my toes including my lungs and heart walls and vessels. But fortunately, they are spread all over the place, and there is a set number of them, so that slows the process down. But by the time one is 80, it moves faster because it has been doubling and doubling along the way. Yes, it has been very difficult to track down because the docs don't want to fail, and there is very little they can do. But some new meds are on the horizon so there is hope. https://bit.Ly/1w4j7j8

Jump to this post

@oldkarl so sorry to hear that, we will all keep our fingers crossed for a cure very soon.

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