(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

@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again… I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days …. I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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@america do you trust your docs implicitly?

@boomerexpert

@america do you trust your docs implicitly?

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Yes I do! He’s a great doctor. My only regret is that I’m almost 5 hours away so I can’t be there as often.

@america great…then he will continue working with you to find meds that are both effective and tolerable!

Liked by america, anniepie

@america

Yes I do! He’s a great doctor. My only regret is that I’m almost 5 hours away so I can’t be there as often.

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@america For half of the year, my doc is over 24 hours away. I knew that going in, so we developed a care plan that included getting to know his nurse & check-ins/questions by phone & email with either of them. It is working well for me.

Liked by america

@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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The side effects should subside over the next month or so. If not talk to your doctor he can change and try other ones.

@sueinmn

@america For half of the year, my doc is over 24 hours away. I knew that going in, so we developed a care plan that included getting to know his nurse & check-ins/questions by phone & email with either of them. It is working well for me.

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Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.

@america

Hi Sueinmn! Thanks! I do speak with the nurse from time to time. I feel being closer would help but for now I’ll do what I need to. This disease is lot more complicated than I thought.. this group has helped me in many many ways. But it’s scary having one vocal cord, Sjogrens, RA, restless leg syndrome and so much pain daily. I do get discouraged from time to time. I am thinking about moving because in the Tampa area I think it’s infested with Mac. I would love any thoughts on this. Thanks again Rita.

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@america Hi Rita,
I would think very hard about moving to avoid MAC (or any other single germ) – I have now learned that MAC is everywhere, even in our home water supplies, etc. I don't know if anyone could give you a definitive answer on where to go to completely escape it.
Most of us on this group have multiple health issues, the trick lies in figuring out how to live as well as possible without getting sick(er.) I personally focus on what I CAN DO, even if I cannot do it every day, and on staying as strong as possible through good diet, supplements, exercise and attitude. That can be pretty hard on bad days, then I try to give myself a pep talk, or talk to a friend or family member who will buoy me up. Good luck with your treatment for MAC, if the side effects don't subside, or grow worse, get in touch with your doc. Sue

Liked by Brenda R., america

@sueinmn

@america Hi Rita,
I would think very hard about moving to avoid MAC (or any other single germ) – I have now learned that MAC is everywhere, even in our home water supplies, etc. I don't know if anyone could give you a definitive answer on where to go to completely escape it.
Most of us on this group have multiple health issues, the trick lies in figuring out how to live as well as possible without getting sick(er.) I personally focus on what I CAN DO, even if I cannot do it every day, and on staying as strong as possible through good diet, supplements, exercise and attitude. That can be pretty hard on bad days, then I try to give myself a pep talk, or talk to a friend or family member who will buoy me up. Good luck with your treatment for MAC, if the side effects don't subside, or grow worse, get in touch with your doc. Sue

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Yes defiantly do not move to avoid MAC. The bacteria that causes it is everywhere and in every home. Mostly only people with a low immune system or other lung problems will develop MAC. My doctor is still trying to figure out where I may have contacted it.

Liked by Brenda R., america

@catherine123456

Yes defiantly do not move to avoid MAC. The bacteria that causes it is everywhere and in every home. Mostly only people with a low immune system or other lung problems will develop MAC. My doctor is still trying to figure out where I may have contacted it.

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I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record – there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that – all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ … Don’t rule moving out as a viable consideration

@lainey

I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record – there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that – all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ … Don’t rule moving out as a viable consideration

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Can anyone tell me what pseudomonas is? It has been mentioned several times and I wonder how it is related to Mac and bronchiectas.

@windwalker

@america Oh Rita, I am sorry your news was not good. I hope that your pseudomonas goes away as quickly and easily as mine did. Hang in there Rita, conquering mac takes a long time. Sending you a BIG cyber hug !

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I’m not sure how to address a question to a specific person here and I sometimes feel like I’m butting in with an unrelated question. But I am wondering if anyone can explain pseudomonas and how it is related to Mac and bronchiectasis.

sounder27 I believe it's a serious bacteria….. I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

@auntnanny

sounder27 I believe it's a serious bacteria….. I have it in lungs and in sinus cavaties. I recently had sinus surgery because doctors thought perhaps I was getting excessive drainage into lungs. They cultured a sample from sinus and then asked me to use powdered Levaquin in a sinus wash twice daily for two weeks. I did that. I don't know if it got rid of the pro blem but I doubt it. I know that is the main bacteria in my lungs at this time. Apparently it's hard to get rid of. I've had other bacterias throughout the last few years but the pseudomonas has been the hardest for me. Don't know if this helps you at all but I'm sure there are many on here who can share more information.

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Thank you. I have excessive post nasal drip and both Mac and bronchiectasis. I have had serious pneumonia in the past for which I was hospitalized for over a week. I constantly cough and choke on mucus but my pulmonary doc has not said anything about pseudomonas infection. I also have sneezing fits. That is why I was wondering about it.

@sounder27

I’m not sure how to address a question to a specific person here and I sometimes feel like I’m butting in with an unrelated question. But I am wondering if anyone can explain pseudomonas and how it is related to Mac and bronchiectasis.

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The way I understand it –
it is one of the types of bacteria commonly found in patients with MAC and those with Bronchiectasis. It was the last bacteria for me to get rid of – took a long time and it takes a lot of work to keep it gone -which is why lung hygiene/ airway clearance is a MUST ( once every day and twice daily when you feel something coming on) A routine that we must accept as a daily regimen. PLUS what some of the other posters have said- exercise, adequate sleep, good nutrition and positive attitude. I’ve incorporated my bible study in with my Pulmonary therapy / nebulizer treatments and that has been a blessing to me. Best wishes and be stubborn and persistent about taking care of yourself.

Liked by Brenda R.

@lainey

I do agree with all the above, but feel I must add a bit to this discussion. I also live in the central Florida area ( not far from Tampa) I have bronchiectasis, asthma, several other health issues but still cleared from MAC since 2016- thankfully. Just for the record – there is absolutely no question that living in a hot, humid environment puts me at a much greater risk for exacerbations. It is a constant struggle to stay healthy here. I go to Colorado and North Georgia as often as is possible. I am careful wherever I am because it is true that you can get MAC anywhere, but it is easier to build up a resistance and maintain a stronger “defense” in better climates than here. I wish it wasn’t like that – all my children live closer to my home in Florida. I am strongly contemplating a move. I am trapped indoors with dehumidifiers, air cleaning devices, double the amount of airway clearance and pulmonary therapy, etc., etc. Just sayin’ … Don’t rule moving out as a viable consideration

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@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick. I left Virginia because I always got pneumonia and mac there. I left Tucson Az because I got mac there too (Az is a known hot-bed for mac.) plus I had difficulty with the altitude. My oxygen levels increased by 6 by moving to sea level. I think Virginia was too humid in the summer and too damp and cold in the winter. After it rains there, the dampness just stays and makes for a lot of molding rotting leaves. In other words, lots of fungals. I now live near the ocean in S.C. Rainwater drains away quickly in the sandy soil so it doesn't feel damp. It does get humid here in the summer, but it is a short duration compared to many states. I have never felt better as far as having clear lungs and negative test results for mac & pseudomonas since I moved here. Moving here was the best thing I could have done for myself. I am still short of breath and energy though, but at least not coughing any longer.

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