(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!

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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.

@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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That is awesome for you. I am so happy for you! I hope that continues!

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@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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My family would gladly send me there if there weren’t such unrest in that part of the world!

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@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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Those numbers are listed ! They are not accurate, however, because it is not a “reported” documented disease by the CDC. Just since I joined this group the numbers have gone up.

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@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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I agree with everything you say. I have been to many ID doctors ( because we moved) and have found that most wish there were a less toxic treatment, and feel that for many patients they treated only a few made it through the treatment which is frustrating for them as well. However, the consensus for me since mine was progressing and I was losing so much weight was that treatment was the only option, and the sooner the better. They were not at all adverse to my taking vitamins like D and C and calcium etc They encouraged that. They also want me taking/using other things at this point to which I told them I am not a party animal - boring really I guess. And yes we know our bodies best. I am just hoping for a less toxic cure (sooner than later) so I can switch to that. We need to weigh our options and make informed decisions based on everything. My family wants me to “live” so I am doing the treatment for them.

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@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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I stayed on the meds as long as I could, but my body could not handle them. I was very active and this illness has stopped me.

Ling123...Please private message me.

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@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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From what I am reading there is a plan for a phase II trial in the US We need to right the FDA to approve the protocol to start the study

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@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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What form of Nitric Oxide are you getting?

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@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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Yes!

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They better have several trials since there are so many of us ready to enroll!!!

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I have just started my MAC journey and the pulmonologist I saw yesterday recommended a chest wall oscillation therapy vest to clear the mucous from my lungs, twice a day for ten minutes. Sure beats all those horrible anti-biotic treatments - if it works! He said that Medicare would pay for it. Not sure whether they would buy it for us (those on Medicare) or pay for the rental. It is quite expensive. Since I am a new member, I was not able to put in the link, but, if you're interested, google for chest wall oscillation therapy vest.

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