(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@conniewright

I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

Jump to this post

@conniewright I feel the same way about taking the medications for MAC and risking my vision and hearing. Shortness of breath and occasional fatigue are my only symptoms and for now am willing to live with that. I will wait and see if the disease and/or symptoms progress.

REPLY
@conniewright

I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

Jump to this post

Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

REPLY
@phyllistamara

am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis
Wish I knew others who took these drug to help with this disease to quell My fears

Jump to this post

Do not let yourself suffer from the meds. I could not take Rifabutin at all, but do beautifully with Rifampin which is the sister. Squawk if one of them is making you sick. They can change it out and they should or get a new doctor. My doctor in Tyler would never have let me suffer or be in bed from the drugs. I read where these poor patients spent a year on the couch. Ridiculous and not necessary.

REPLY
@unicorn

Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

Jump to this post

Thanks for sharing the info.about AIT

REPLY
@conniewright

Do not let yourself suffer from the meds. I could not take Rifabutin at all, but do beautifully with Rifampin which is the sister. Squawk if one of them is making you sick. They can change it out and they should or get a new doctor. My doctor in Tyler would never have let me suffer or be in bed from the drugs. I read where these poor patients spent a year on the couch. Ridiculous and not necessary.

Jump to this post

thanks for this information conniewright

REPLY
@windwalker

@flib Glad to hear you are having another good day. I had a great energy day yesterday, actually got a lot done. Today, I am struggling to breathe. My husband came home today and said "By the way, we are having a small Super Bowl party tomorrow." I wanted to strangle him. I do not do things like that without asking him first. The people coming have small children and as of today; I cannot imagine having the energy to entertain them. (Let alone prep food for a crowd.) I pray that I feel differently by tomorrow. Grrrr!

Jump to this post

@windwalker …I say strangle him and be done with it! haha.

REPLY
@phyllistamara

am going to start azithromycin,Rifabutin,and Ethambuton for MAC. I also have Bronchiectasis
Wish I knew others who took these drug to help with this disease to quell My fears

Jump to this post

Phyllis this is Deborah I'm now on my third month of if I ethambutol rifampin Azithro , i'm 57 and originally started taking the rifampin early in the morning only I've changed my routine because I think that's stressful on the body no I take the ethambutol and Azithro with food late morning and then a couple of hours before another middle of the day meal I take the rifampin I don't empty stomach. This way I'm already focused on the day and sufficiently distracted in a conscious way and it tends to stop me from getting anxious at all in reference to the medication side effects . I drink lots of water probiotics and I am very careful not to wear myself out. It's not easy but it's not impossible. Whoever thought I'd be giving these kinds of suggestions Im still being aware of getting needs met and pacing myself I hope it this helps one day at a time. Surround yourself with as much comfort as possible!

REPLY
@alleycatkate

@windwalker …I say strangle him and be done with it! haha.

Jump to this post

@allieycatkate Ha ha ha! That thought did cross my mind! Thanks for the chuckle!

REPLY
@unicorn

Hi Connie, I hate getting old also! I was so cute, was was. Well at least I'm thin and look great in jeans, thanks to the MAC. I'd like 10 years also. That's what I figure I have left, 10 good years. Maybe good. Yes research is pitiful, but there is some hope from AIT Pharmaceuticals. They are developing inhalants with the Israelis. They are for cystic fibrosis and COPD but they mention mycobacterials also. Just hang in there an watch great stuff on netflix, Oh, and Winter is Coming!!! xo

Jump to this post

@unicorn Ha! My sister and I have a favorite saying (as we get older) 'It's getting harder and harder to look cute'. Have to laugh….

Liked by tdrell, anniepie

REPLY

@physillistemara My wife was on the same three med as you mentioned. She was able to tolerate them for six months. Of course she had other medical problems. She is immunosuppressed due to liver transplant. Eventually she will have to go back on something to suppress her cough. I am going to suggest, if you do go on the meds, please do regular checkup to make sure the side effects are worse than the cure.

REPLY

everyone….two NTM workshops coming up…one in texas. in spring 2019…go to NTMINFO.org to see one……the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend…..probably the NJH one will be taped.
Other items you might be interested in…..
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test…….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies…………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell

REPLY
@tdrell

everyone….two NTM workshops coming up…one in texas. in spring 2019…go to NTMINFO.org to see one……the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend…..probably the NJH one will be taped.
Other items you might be interested in…..
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test…….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies…………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell

Jump to this post

@tdrell, thanks for the information.

Liked by tdrell

REPLY
@tdrell

everyone….two NTM workshops coming up…one in texas. in spring 2019…go to NTMINFO.org to see one……the other in Denver at National Jewish Health on Saturday Sept 21 2019. I have emailed the texas one to see if it will be video taped for those of us unable to attend…..probably the NJH one will be taped.
Other items you might be interested in…..
on NationalJewish.org there is a posting from January 17. 2019 that their advanced Diagnostic Laboratory has launched " a new line probe Molecular Assay to rapidly detect NTM infections and identify NTM species and drug-resistance markers at a molecular level within 48 hours after obtaining a sample from culture. It is the first and only Laboratory in the United States to offer such a test…….is an accurate test that allows rapid differentiation ofM.tuberculosis from several frequently encountered NTM species including the slowly growing M.aviam, M.intracellulare and M.chimaera as well as several rapidly growing mycobacteria , including M.abscessus and its subspecies…………….." it goes on with more uses of this new test.
it says to visit njlabs.org and search for AFB6.tdrell

Jump to this post

Great news thanks T!

Liked by tdrell

REPLY

I cannot find who asked re M.gorgonae…..I just looked it up on Nationaljewish.org with search box…..it says rarely needs treatment…exists in lots of water supplies…usually if found is a contaminant from water source.tdrell

REPLY
@windwalker

@unicorn Ha! My sister and I have a favorite saying (as we get older) 'It's getting harder and harder to look cute'. Have to laugh….

Jump to this post

Yup, hahahaha

REPLY
Please login or register to post a reply.