1. < MAC & Bronchiectasis
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(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.

Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Jan 2, 2018

I think we should all write to the company that is sponsoring the Clinical trial. I believe I sent them an email several months ago. But if we all send it in, then maybe they will take notice.

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1 reply
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boomerexpert | @boomerexpert | Jan 2, 2018

@jkiemen Same here, Joann....or a link to the actual trial rather than the general https://clinicaltrials.gov/ provided...without more info quite difficult to find specific studies there...

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heathert | @heathert | Jan 2, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
Profile picture for suenfl @suenfl

I am in Florida. I would love to take part in a nitrous oxide trial here, as many of you would. The problem is funding. The Canadian one that I know of, there may be others, has funding for 10 local people. I have MAC, diagnosed in July, 2017, but traced back to my open heart surgery in Nov, 2015. I was telling all of my Drs then, what symptoms I was having and they blew me off. No one paid any attention until I had pneumonia 5x in 7 mos. Taking the normal triple antibiotic therapy, but I am so sick from theses drugs. A lot of people are getting this, we need the drug companies, researchers, etc. to take notice and get some clinical trials started. Also Drs need to be more aware of the signs an symptoms so they can diagnose it correctly. Any of you that feel up to making phone calls, call everyone you can think of that can help directly or direct you to someone who can. It all comes down to getting the money to do the research.

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so true @suenfl, I have written to many and have had replys from some, there are a lot of good people out there working on this but getting our word out will help, I was misdiagnosed for a long time also., just awful.

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heathert | @heathert | Jan 2, 2018
In reply to @jkiemen "I have been watching this site. We need to get some of us in that Clinical..." + (show)
Profile picture for Jo Ann K @jkiemen

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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Our hospital organises the clinical trials, maby you could try them.

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Jo Ann K | @jkiemen | Jan 2, 2018
In reply to @dcoburn "Do you have the address?" + (show)
Profile picture for dcoburn @dcoburn

Do you have the address?

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Steven Lisi, CEO AIT THERAPEUTICS INC Steve@AIT-Pharm.com

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unicorn | @unicorn | Jan 3, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
Profile picture for suenfl @suenfl

I am in Florida. I would love to take part in a nitrous oxide trial here, as many of you would. The problem is funding. The Canadian one that I know of, there may be others, has funding for 10 local people. I have MAC, diagnosed in July, 2017, but traced back to my open heart surgery in Nov, 2015. I was telling all of my Drs then, what symptoms I was having and they blew me off. No one paid any attention until I had pneumonia 5x in 7 mos. Taking the normal triple antibiotic therapy, but I am so sick from theses drugs. A lot of people are getting this, we need the drug companies, researchers, etc. to take notice and get some clinical trials started. Also Drs need to be more aware of the signs an symptoms so they can diagnose it correctly. Any of you that feel up to making phone calls, call everyone you can think of that can help directly or direct you to someone who can. It all comes down to getting the money to do the research.

Jump to this post

Yes, good idea, I actually sent the AIT info to two docs at Mass General in Boston. I always say we are a large forum of people. If the drug companies think they can make money, they will do research, say we are thousands, in reality we are. The Canadian trial is phase 2, and they may come to South Carolina for phase 3, not sure. We have to get the drug companies interested in us

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Profile picture for unicorn
unicorn | @unicorn | Jan 3, 2018
In reply to @jkiemen "I think we should all write to the company that is sponsoring the Clinical trial. I..." + (show)
Profile picture for Jo Ann K @jkiemen

I think we should all write to the company that is sponsoring the Clinical trial. I believe I sent them an email several months ago. But if we all send it in, then maybe they will take notice.

Jump to this post

Good idea, We need an American drug co. to step up. Lets get some links posted

REPLY
Profile picture for unicorn
unicorn | @unicorn | Jan 3, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
Profile picture for suenfl @suenfl

I am in Florida. I would love to take part in a nitrous oxide trial here, as many of you would. The problem is funding. The Canadian one that I know of, there may be others, has funding for 10 local people. I have MAC, diagnosed in July, 2017, but traced back to my open heart surgery in Nov, 2015. I was telling all of my Drs then, what symptoms I was having and they blew me off. No one paid any attention until I had pneumonia 5x in 7 mos. Taking the normal triple antibiotic therapy, but I am so sick from theses drugs. A lot of people are getting this, we need the drug companies, researchers, etc. to take notice and get some clinical trials started. Also Drs need to be more aware of the signs an symptoms so they can diagnose it correctly. Any of you that feel up to making phone calls, call everyone you can think of that can help directly or direct you to someone who can. It all comes down to getting the money to do the research.

Jump to this post

What I don't understand is why the Jewish hospital in Denver, supposedly the leader in MAC isn't doing anything new. I wrote to them and they didn't bother to write back. I mean, here they are, cutting edge, with the same old crappy pills they gave me 5 years ago, and they still don't work.

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