(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!

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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:

  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

@boomerexpert

@jkiemen have contact info for either/both Jo Ann?

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to all Connect MAC/Bronchiectasis members:  do any of you have oxygen at night, night and day, 24/7 ?  Just curious as to whether this is sometimes helpful.
Pat

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Thanks

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@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don’t want anything else wrong with me!! Enough is enough. Cheers, Christa

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@joan I agree with you Joan! Medication can be worst then the Disease. Eat a goos diet and take natural product (consult a nutritionist or oesteopath) at least you won’t have all the secondary effect.  All medication is a trial and error (we are ginny pig)

so if it doesn’t work find something that works with less effect on your health! 

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@unicorn

Hi all: Just wondering if anyone else is experiencing rapid and erratic heartbeat? I am afraid the MAC, and MAC pills, gerd, and hiatal hernia (caused by the pills) did something to my heart. I think it is all related and it is scary.
At night, when I lay down, and my tummy wants to crawl up into my throat, my heart gets affected I think. Rapid erratic beating and seems to be getting worse. No one in my family has had heart attacks, but no one else had this disease. I know I should go to cardiologist but I don’t want anything else wrong with me!! Enough is enough. Cheers, Christa

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Fortunately, some of us are lucky to stay in the “watch and wait “ group. Unfortunately, some of us get “promoted” to the medication group.

Liked by heathert

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@boomerexpert

@tdrell @jkiemen et al: Whether or not the Israeli NO study was successful (and I believe it was more so than stated here, either result leads to the clear indication of how much more research is needed…NJH is very disappointing with their focus on everything but MAC/NTM’s…Do you have contact info for this Dr. Daly so we can contact him en masse?

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CDC and NIH primary governmental funders of research…but their budgets continue to be cut…what we must do, beyond letting them know how serious and prevalent MAC/NTM’s are, is to vote in legislators who understand the value of their funding and will increase it.

Liked by heathert, 1478

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I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

Liked by angiejohnson

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wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@tamela Welcome. What you are going through sounds horrible , I hope that you have a better journey ahead and everything heals up well. If you have any questions about the meds or anything else please ask the group. Between us we have alot of knowledge.

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@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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Did they tell you what type of MAC Bacteria you had? That sounds like you have been through allot. Had you been coughing or had lung issues for some time before your were diagnosed? Are you from a prone areal of the country?

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@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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Jarrow’s Formula

Liked by Jen_b

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@1478

wow, This is good to know! My mother want into the hospital at 7000 ft because she started coughing up blood via a capillary bleeds and they set her up for a lobeectomy within 8 hours. She refused the lobectomy and they went in and cauterized her capillary; stopped the bleed. She came back down to 2000 ft and has been fine since. This makes me even more thankful she refused. I know this is a VERY different senerio, but the message for a lobectomy is still the same. Thank you for sharing.

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@1478 welcome! OMG that is a major operation.  I feel so bad for you.  My brother a both lung transplant and it was a long major operation but I think that was worst.  He caught a bacteria and needed to have surgery a second time within a month.  He nearly

died then.  Take good care and see a nutritionist to get the proper vitamine to get your immune system on a high performance again.  I will keep you in my prayer to get well soon!

Liked by tdrell

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@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela…..was there any consideration to a closed lobectomy? You poor dear! I Apache for you. Tdrell

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@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela I’m so sorry you have gone through what you have! I hope the pain stops soon and you get your life back. Do you mind sharing where you had your surgery. I went to National Jewish last year and they talked about surgery because of lesions in my lungs but I feel fine so said I will wait and see if I get reinfected (MAC eradicated for now). Best to you and I hope you feel better soon!

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@tamela

I was diagnosed with MAC Pulmonary March of 2017 I had top right lobe removed day before Thanksgiving the bacteria buried itself deep in the lobe so antibiotics would not have worked. Since surgery I have splatters here and there on other parts of the lung so I’m starting my cocktail of antibiotics today. I will mention that the surgery is the most invasive and painful a body can go through. The ribs from being separated are beyond painful along with cut nerves and muscle. It’s the middle of January and I’m still in a lot of pain it takes a toll on you mentally and physically. I do not get much accomplished I can do a pad of laundry and I’m them worn out. The incision for what ever reason busted back open so I have a nurse come 2 times a week plus my husband does all the work because it has to be changed and packed 2 times daily. I really suggest you be persistent with your doctors about how deep MaC has gone into any part of lung before surgery. It’s been brutal.

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@tamela, Hi Tamela, and welcome to our group. Gosh, I am so sorry to hear about you needing surgery and still suffering with pain. I amsure I can speak for all of us in sending you a great big cyber hug. When you are feeling up to it, I’d like to know more about your circumstances with this disease. Surgery in less than a year after diagnosis sounds unusual. Do you think you had been sick with MAC for quite some time prior to March of 2017, and were just never properly diagnosed?

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@mac5ia

In my 12 year MAC journey I have recently reached the stage where I must start medications. I have GI track problems when taking antibiotics. What types of nutrition changes have any of you made to tamp down the GI difficulties?

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@mac5ia, Welcome to our online support community. I am so glad that you found us. Taking probiotics seems to be key for keeping your GI straight while on the antibiotics. You must wait two hours after and before you take your antibiotics to take the probiotics. Otherwise, the antibiotics just kill off the good bacteria before it can get into your system. Many have said that taking the rifampin on an empty stomach works best for them. You can tweak your medication schedule so that it suits your tolerance. I hope you have no trouble with it. What part of the country do you live? I like to keep track of where mac is rearing it’s ugly head.

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