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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 11, 2018
In reply to @alleycatkate "@windwalker ...bless your heart for all the work you do to help us cope and get..." + (show)
@alleycatkate

@windwalker ...bless your heart for all the work you do to help us cope and get better. I cannot tell you how uplifting your post was that said using a saline solution and nebulizer makes a very hostile environment for MAC. I feel as though i regained my sanity reading that! Looking forward to your FB page!!

Jump to this post

@alleycatkate, Hey, you added your pic! Nice to see your smiling face. I am not so sure about starting a Face Book page for MAC. Because we have this Connect group here where more and more people seek support. I need to be here for them. I will speak with the moderator for this group to see if we can modify or learn to make following my posts here easier. I know there is a way. I am still learning to be tech savvy myself. Will get answers.

REPLY
nick52 | @nick52 | Jun 12, 2018
In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)
@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

Jump to this post

@soflo welcome to our sight! You found the right place to make choices.  Our treatment vary and you have nothing to be scare of if you have no symptom or little symptom. I am bronchectasis and had a MAC.  Never taken the antibiotic treatment because my infectious

Dr says it hasn’t proven to be effective as much as they thought and people were getting sicker.  I had mild symptom at the beginning of the MAC and that is used as a last ressource.  In my case I was treating my little symptom with natural therapy.  I have

used Colloidal silver because taken internally it fights infections and it has been shown to be effective against more than 650 disease-causing organisms, including Escherichia Coli (E-Coli)bacteria and the fungus Candida albicans.  It is also good to fight

cold and flu (according to Dr Balch), i also used Clear lungs from Ridgecrest the blue cap to clear the lungs if I had to much sputum or coughing more than I should. I also use Dr Ohirra Professionnal pro and prebiotic.   Soflo you are the only one who knows

your symptom and you can consult an herbal nutritionist or an Omeopatic consultant to help you with natural remedy.  I feel it is safer and I have a normal life as I was before.  I believe in Herbal medicine and it work well for me and sure have no secondary

effect.  Last fall my bronchoscopy confirm that I do not have The MAC anymore so stay positive and do as if you had nothing because many people live with a MAC and are asymptomatic. I am very careful with Dr’s prescription.  I do take some antibiotic when

necessary do not get me wrong but would refuse to be on it the rest of my life.  Good bacteria is what keeps your immune system high to fight bad bacteria so why would I want to destroy that.  For precaution I kept taking Dr Ohirra professional pre and probiotic

to get as many good bacteria in my body.  My doctor compare it to an army.  If you have a good army to fight the enemy chances are higher to win.  Good luck and keep up living normally until you are more symptomatic.  MAC was giving me a feeling of having

slimy throat and i would cough sputum  more than usual and if my lung felt a bit congested I was using Clear lungs right away.  I wouldn’t wait to get it worst.  Do not worry you can get rid of the MAC without antibiotic.  Do you have an acid stomach?  Take

care!

REPLY
Jo Ann K | @jkiemen | Jun 12, 2018
In reply to @soflo "Hi Kate and all, I am new here to the group and I’m so happy I..." + (show)
@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

Jump to this post

@nick52 Where did you get the colloidal silver and how long did you take it? Did you have CT scans in the beginning?

REPLY
ling123 | @ling123 | Jun 12, 2018

This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It does not mention anything about lungs. And it seems to suggest that this is a rare disease (affecting 5-12 people per million each year). This publication by NIH does not mention lungs either: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228694/. So I doubt most of us in this group is suffering from this disease. For those who are already feeling anxious and panicky, I hope this will not further frighten you for no reason. If you are really concerned about it, mention it to your doctors at your next appointment to see what they think.

REPLY
2 replies
Flib | @flib | Jun 12, 2018
In reply to @ling123 "This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It..." + (show)
@ling123

This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It does not mention anything about lungs. And it seems to suggest that this is a rare disease (affecting 5-12 people per million each year). This publication by NIH does not mention lungs either: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228694/. So I doubt most of us in this group is suffering from this disease. For those who are already feeling anxious and panicky, I hope this will not further frighten you for no reason. If you are really concerned about it, mention it to your doctors at your next appointment to see what they think.

Jump to this post

Thank you Ling. I'm sticking with diseases I can pronoun.

REPLY
ling123 | @ling123 | Jun 12, 2018
In reply to @ling123 "This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It..." + (show)
@ling123

This is one of the articles that I found online about light chain amyloidosis: http://cjasn.asnjournals.org/content/1/6/1331.full. It does not mention anything about lungs. And it seems to suggest that this is a rare disease (affecting 5-12 people per million each year). This publication by NIH does not mention lungs either: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228694/. So I doubt most of us in this group is suffering from this disease. For those who are already feeling anxious and panicky, I hope this will not further frighten you for no reason. If you are really concerned about it, mention it to your doctors at your next appointment to see what they think.

Jump to this post

@flib Ha, ha... I wasn't sure how to pronounce amyloidosis either until I watched a youtube video.

REPLY
yayaaz | @yayaaz | Jun 13, 2018

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

REPLY
14 replies
irene5 Irene Estes | @irene5 | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

Jump to this post

Medicare covers all my MAC meds! Maybe your aunt or you as her advocate could call and check on that. Good luck!

REPLY
yayaaz | @yayaaz | Jun 13, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

Jump to this post

Oh good to know that Medicare covers the meds.
Thank you, Renee

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