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.

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)
@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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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.

REPLY
irene5 Irene Estes | @irene5 | Jan 3, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
@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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Good question! Since we moved back to Connecticut from Tennessee the doctors here suggested my going there, but like you said “ it’s the same pills!” And this disease has changed my life to the point of having minimal quality and few “good” days.

REPLY
boomerexpert | @boomerexpert | Jan 3, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
@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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@unicorn I agree, so I emailed them saying:

Why does it take a group from Israel (AIT-Pharm.com) rather than you, the US leaders in respiratory medicine, to finally derive and test a more effective, (and inhaled) treatment?

As one of the almost one million (and growing) nationwide with a form of NTM, getting little relief from the last-century, ineffective treatments currently in use, I must admit, I’m surprised and disappointed.

Please do better.

Terri Benincasa

email address: physicianline@njhealth.org

REPLY
cathyxyz | @cathyxyz | Jan 3, 2018

I have been part of the chat group for about 5 months, and I would like to reply to this question in my opinion. I started on the medications prescribed for me about 6 months ago after having pneumonia. I found after a few months, I couldn't do it. I had felt fine after recovering from pneumonia, speed walking an hour a day, traveling, etc. I did not have a cough. The doctors really scared me into taking the medications. The damage the high doses of antibiotics did to my body and misery it caused were not worth it for such a long time ahead of me in their plan. I just dropped it because I don't believe them. This is just my own opinion. I have read a lot about some doctors who build up the immune system that fights for us every day. There are many epidemics that have spread throughout the world where thousands die and yet thousands don't even catch it even if they have not had any vaccinations because they have a strong immune system. Presently, I am building up my immune system with various things such as vitamins C and D in large doses. I know the body only absorbs so much, but that is just a small example of what I am taking. I have herbs, high does of Colostrum, some Nitric Oxide, and learning more and more. The medical profession would never, ever, have a part in this and that is what we have. Our medical profession is so valuable and life saving to our society, we treasure what they say, and I do too, but they might be wrong sometimes.

REPLY
9 replies
suenfl | @suenfl | Jan 3, 2018
In reply to @cathyxyz "I have been part of the chat group for about 5 months, and I would like..." + (show)
@cathyxyz

I have been part of the chat group for about 5 months, and I would like to reply to this question in my opinion. I started on the medications prescribed for me about 6 months ago after having pneumonia. I found after a few months, I couldn't do it. I had felt fine after recovering from pneumonia, speed walking an hour a day, traveling, etc. I did not have a cough. The doctors really scared me into taking the medications. The damage the high doses of antibiotics did to my body and misery it caused were not worth it for such a long time ahead of me in their plan. I just dropped it because I don't believe them. This is just my own opinion. I have read a lot about some doctors who build up the immune system that fights for us every day. There are many epidemics that have spread throughout the world where thousands die and yet thousands don't even catch it even if they have not had any vaccinations because they have a strong immune system. Presently, I am building up my immune system with various things such as vitamins C and D in large doses. I know the body only absorbs so much, but that is just a small example of what I am taking. I have herbs, high does of Colostrum, some Nitric Oxide, and learning more and more. The medical profession would never, ever, have a part in this and that is what we have. Our medical profession is so valuable and life saving to our society, we treasure what they say, and I do too, but they might be wrong sometimes.

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Sounds like what I have been through. Have been staying with a friend in Tampa, but going home to Tallahassee Friday. Not sure how I am going to handle this alone.

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

So true, I organised a big list of drug/ research companies dealing with antibiotics/other methods of killing bugs for other illness(not Mac) and boomerexpert rang them all and left messages, none rang her back. I have emailed a few and have had replys, some saying they are not planing on testing on MAC at the moment but ask me to tell them about MAC, at least we are getting the MAC name out there with the drug/research companies. If we can all keep doing that it will help.

REPLY
ling123 | @ling123 | Jan 3, 2018
In reply to @cathyxyz "I have been part of the chat group for about 5 months, and I would like..." + (show)
@cathyxyz

I have been part of the chat group for about 5 months, and I would like to reply to this question in my opinion. I started on the medications prescribed for me about 6 months ago after having pneumonia. I found after a few months, I couldn't do it. I had felt fine after recovering from pneumonia, speed walking an hour a day, traveling, etc. I did not have a cough. The doctors really scared me into taking the medications. The damage the high doses of antibiotics did to my body and misery it caused were not worth it for such a long time ahead of me in their plan. I just dropped it because I don't believe them. This is just my own opinion. I have read a lot about some doctors who build up the immune system that fights for us every day. There are many epidemics that have spread throughout the world where thousands die and yet thousands don't even catch it even if they have not had any vaccinations because they have a strong immune system. Presently, I am building up my immune system with various things such as vitamins C and D in large doses. I know the body only absorbs so much, but that is just a small example of what I am taking. I have herbs, high does of Colostrum, some Nitric Oxide, and learning more and more. The medical profession would never, ever, have a part in this and that is what we have. Our medical profession is so valuable and life saving to our society, we treasure what they say, and I do too, but they might be wrong sometimes.

Jump to this post

@cathyxyz I agree with some of what you have said. I value the opinions of trained medical professionals immensely and would follow their advice most of the time. But I also follow my own gut feelings many times, which have not led me down the wrong path. We know our bodies better than anyone else, doctors included. The latter may have a ton of experience and knowledge, they don't know how we feel on a daily basis. So they have to go by the book so to speak. I don't fault them on that because they have taken their knowledge out of treating numerous patients that share the same diseases. But each person has their unique physical conditions and circumstances and biological traits. There is no one-size-fits-all here. I was offered an option to take or not take the strong antibiotics when I was first diagnosed. After learning all the negative effects that these drugs could do to the organs if taken long term, knowing that I was otherwise very healthy and had no difficulty with activities and daily living, I opted not to take the medication despite the fact that I had coughed up a very large amount of blood due to the MAC infection. After examining me and reading my chest X-ray result, doctor agreed with my decision. We decided that we would revisit the drug option when and if my condition worsened. That was 3 years ago. My condition has been stable and showed some improvement according to the latest chest X-ray. The only supplements that I'm taking on daily basis are Vitamin D, calcium, and multi-vitamins. Nothing else. But I try to stay active and eat healthy. A lot of vegetables and fruit. Whole grains. I will be paying my pulmonary doctor yearly visits to find out how I'm doing (sooner if I start to feel unwell) and plan on living happily going forward until I can't. So far so good. Fingers crossed. Hope you are doing well with your alternative regimen and keeping the bugs at bay.

REPLY
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)
@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

Excellent. They do have a clinical trial for nitric oxide for MAC going on now in Israel, just not here, go figure

REPLY
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)
@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

We need to get some real numbers of how many people here have MAC, we need the drug companies to see big dollar signs if they effect a cure.

REPLY
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