(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 group.

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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@Paula_MAC2007

Nick, oh my, you have my sympathies!!! Like Shelby, I can’t imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor’s orders — and exercise (ie walk) as much as you can to get your lungs working at ‘full’ capacity (for you) and get plenty of rest/sleep. I’m on all 3 meds – for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and ‘powering down’ mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the ‘expert’ in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs – and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That’s been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.

Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You’ve certainly got your hands full — please keep us periodically updated on how you are doing. We’re all in the ‘club’ together! And CONGRATULATIONS on retiring!

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Paula, thanks for the info. I was thankful to see that I’m not alone with this MAC. I’m having hard time sleeping at night and on top of that I have acid reflux and high cholesterol. Its so difficult what med I can take w/ the 3med that I’m on now. Thank you all so much for your post.

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Cila, I’m so sorry you are so nervous. I know it is so overwhelming when you read everything on the internet. It really scared me at first. I know I’m one of the lucky ones since I don’t need treatment. I really feel for you. I think this message board will be a godsend for you. Everyone sounds so helpful and supportive. You’re not alone in this. Any one of them will answer questions you have about medicines or how to deal with side effects or which Drs. to see. Just reading some of the older posts can actually help. While some people struggle, many others do well or find ways to cope and they learn from each other. Ask questions. Someone is sure to have an answer or will point you in the direction so you can get the answer.
Hugs,
Janet

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Hello.  I’m on a 3 antibotic treatment for MAC. One of the things I’ve learned from here is get a good probiotic.  I asked 2 different pharmacists and they both said florastor.  I have to take one in the morning and one at night so far.  I’ve also noticed when I eat greasy food I get more indigestion and looser stools…so trying to stay away but somedays it’s hard.  I’m also trying to eat a container of yougert a day too.  I  also started 1 in the am and the other 2 in the evening but it made me feel nausea.  So now I take 1 and each meal and that has helped…as long as I eat enough food at that meal. Tomorrow will be 2 weeks that I’ve been taking them (along with a small medicine cabinet of other rx for other things – reflux, hashimotos, allergies, sjogren’s,  joint pain).  I think so far I’ve done okay compared to others.  I’m just waiting for the day my fevers subside so can stop taking tylenol 🙂  good luck to you and you will make it through.  I tell myself ‘everything is temporary’…it’ll get worse or it’ll get better (I always hope for better but life is a journey) and only one person (in my mind and heart) knows when the temporaryness (if that’s a word) will end and a new one begins.

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@justjanet

Katherine,
I’m not sure how this works so I hope this will get to you. I have read many of the posts here and I am so incredibly blessed compared to pretty much all of you. I’m 60 yrs old. I was just diagnosed with mild bronchiectasis. But, I think I’ve had it for many years. They found it because I had chest pain so they did an xray – that looked a little off so they said might want to follow up with a ct scan in 6 weeks. The chest pain went away so my Dr. said I didn’t really have to have the CT scan, but since I was a former smoker (25 years ago) I’m always a little nervous so I said do it. That’s when they diagnosed me with mild bronchiectasis in two lobes of my lungs and MAC/MAI infection. I have no symptoms other than sometimes dry/sometimes mucousy cough that I’ve had for many years. Some mild fatigue occasionally and a little trouble keeping weight on although that may be due to some depression due to my husbands death a few years ago. So, I’m really doing great all things considered. My pulmonary Dr. who is a fellow (not crazy about that) and her attending at Duke are recommending a followup CTscan at 6 months to make sure the infection hasn’t progressed as that could make my bronchiectasis worse among other things. I’ve opted to have a bronchoscopy to get a culture even though they say they know it’s MAC and the culture could always come back negative from getting a bad sample. They’ve advised against starting treatment until I need to – until or if I start having issues since the treatment can be so awful. That makes sense to me. I guess I’m wondering if you think that sounds reasonable also? I know you’re not a Dr. but I’m a great researcher and there’s no information out there on how to treat patients that look and feel pretty darn healthy. I just want to be proactive. If I were to suddenly get worse, I think I would go up to the Mayo to get a second opinion and see your Dr. I’m actually a MN girl – my whole family is up there so it would just be a trip home to me! Everything I’m getting on the internet stresses the need for exercise, eating right, rest. My Dr’s didn’t even bring that up. Also, I read-on here I think- that some people never have issues with this? Wasn’t there a 90 yr old woman living with MAC for 20 years? I don’t know how many people out there are like that. Thanks, Katherine. You are an Angel for supporting everyone in this. You’ve definitely earned your wings! 🙂

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Hello Janet, I can only speak for myself .. but if I was you .. I would get my little fanny to Dr. Timothy Aksamit at Mayo Clinic for a second opinion just as fast as an airplane could carry me!! (and as soon you can get an appointment which does take time so call right away! 507-284-4348 .. not sure if I am supposed to be giving that out!) It could be a nice trip home to see family in MN and at the same time gain peace of mind.

Here’s why from my perspective. I was told for a LONG time the only thing wrong with me was that I had ‘asthma”! Meanwhile the MAI/MAC was developing “colonies” because I did not take action! At that time I also not feel “sick”. In fact if you have read through the threads you know I delayed antibiotic treatment because I really did not have proper information. Due to my fear I waited until I had a SECOND mycobacterium! I really did not feel unwell until I got the second serious abscesses mycobacterium. Right or wrong .. I always kind of blamed myself that if I’d gone on the antibiotics initially I might never have gotten the second serious mycobacterium .. that I’d really weaken my lungs. Who knows but I wish I’d been more proactive. But at that time this Forum didn’t exist .. I was all on my own .. it felt pretty lonely!

Why a second opinion from Dr. Aksamit. Because after seeing him you will KNOW if you need to go on antibiotics .. OR if you can delay treatment. You can trust you are doing the right thing.

After going to him for quite a few years in various states of my three lung diseases I have observed his diagnosis process. It is NOT a simple one. MAI/MAC CANNOT be cured .. it can only be “stabilized”. Once it gets in our lungs .. and NO ONE yet knows just how mycobacterium gets in our lungs .. you can’t get rid of it .. only stabilize it. That is why determining treatment is like putting together a BIG PUZZLE PIECE! I’ve watched him. He asks me questions .. looks at my current and past testing either of Xray .. MRI’s , sputum culture tests, breathing test .. on and on and on. He puts that all together and then decides IF/WHEN I need/don’t need antibiotics.

To me this man walks on water .. I would trust him with my life. He speaks all over the nation and world on MAI/MAC .. that is one of the reasons it is hard to get in to him. Last time I saw him I told him “he needed to remember the patients who loved him before he got famous!” He just laughed! He is just a doll! Personally that is why it scares me when I know some of our people on the Forum are forced to go to doctors who are not specialists in MAI/MAC .. who do not specialize in this. One person on our Forum told me her doctor only had one other patient with MAI/MAC.

SO, Janet .. this is just me .. I would sleep better at night if I got a good second opinion that said .. Nope you don’t need antibiotics yet .. OR .. We need to get you on antibiotics PRONTO .. AND then tell me WHICH antibiotics are the ones that are BEST for me! So Janet, I’m sending you a Big Hug on the GORGEOUS Minnesota day .. it has been a glorious one!

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Cila, I am SO sorry you are feeling this way. I know in the beginning I was really afraid also. But in the beginning I felt really alone because there was no Forum or support system like this Forum available at that time! Keep coming back here .. there are really good people here who are or who have been on this same shared journey.

Personally I took 4-5 antibiotics for thirty months for my MAI/MAC .. AND NOW I have been stable since May 2014!! I am happy .. healthy .. living a lovely live! Trust me .. there IS life after the antibiotics! It is REALLY important that you NOT fear this .. REMEMBER “Knowledge is POWER”! Take charge of this! When you can .. read over the other pages of posts here on this Forum .. there is a LOT of knowledge .. information .. AND support there. Remember .. we are here for you. Reach out .. we will be here!
Sending you a BIG hug! Katherine

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@Paula_MAC2007

Nick, oh my, you have my sympathies!!! Like Shelby, I can’t imagine having Cancer and MAI/MAC!! I can only recommend that you follow your doctor’s orders — and exercise (ie walk) as much as you can to get your lungs working at ‘full’ capacity (for you) and get plenty of rest/sleep. I’m on all 3 meds – for 3 years I took them every day. Boy, the first year I was sick with MAC and then the drugs made me quite nauseous and tired. I worked 10-11 hr days. But I found going to bed early, taking all the meds at once, and ‘powering down’ mentally was more tolerable than taking them in the morning. After 1 year my doctor moved to Florida (near you!), and I got the ‘expert’ in MAC at the teaching hospital where I go. Got feeling so well, that after several years I went off the drugs – and after 3 months began getting sick again. He put me back on the meds but lowered the ethambutol (was on 1,000 MG a day), and instead of taking the meds every day, I take them every other day. That’s been 3-4 years and I am doing just great! Have had lung biopsies and lung washes and the MAC appears not to be growing.

Yep, the side effects do go away over time. But with you being on Chemo, it may be hard to know which is causing tiredness or nausea. You’ve certainly got your hands full — please keep us periodically updated on how you are doing. We’re all in the ‘club’ together! And CONGRATULATIONS on retiring!

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@cila Cila, I also have acid reflux (Gerds) for which I take Aciphex daily and one thing I have found helpful is to raise the head of my bed by 5 inches. An easy to understand article on it is at http://www.wikihow.com/Relieve-Acid-Reflux-with-a-Raised-Bed . Changing my bed has helped me quite a bit! You might read back on the previous posts .. different people have tried various methods .. times of days etc with the meds .. might give you some ideas of what has worked for other people. Hope this helps you. Remember you are NOT alone .. we are all on this shared journey together .. just at different points on the journey .. trying to help and support each other! Sending you a hug! Katherine

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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I like your philosophical approach to this situation. And as a microbiologist who also suffers from MAC I must always remind myself about just how fortunate we are that there are antibiotics today to help us control this infection. Not long ago, folks were not so lucky.

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Thank you Liliane, I really like to live by what I call my “gratitudes” .. reminding myself of all the things I have to be grateful for! Maybe it is just because someone smiled at me that day .. or because the sun shone today .. or just whatever! I absolutely believe in that old saying that “happiness is an inside job” .. and that each morning when we wake up we can make a new decision to be happy that day! It may sound hokey but I believe it.

You are so right .. we are SO blessed that there is a TREATMENT to stabilize our MAI/MAC .. we can get help!! Just today my husband saw his Cardiologist for his heart issue .. Afib. He is taking a newer medication called Eliquis which has almost zero side affect for him. Whereas his mother ended up in a nursing home for 17 years with a severe stroke. So sad .. had this or even an older medication been available back then so much sorrow would have averted for his family. Frankly, those of us with MAI/MAC would have SEVERE lung issues without the antibiotic treatment available to us today with the tools our doctors have now. Thank you Modern Medicine!

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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http://www.maclungdisease.org/frequently-asked-questions
I have found this University of Texas article very informative. Hope you all like it!

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@cila

I was diagnose w/MAC 2months ago and was terrified. I search and trying to find info.,like you I get terrified. Sometimes I avoid looking into it, trying to ignore the decease. I didn’t want to take the treatment b/c of the side effect, it scares me get so nervous that I start shaking. Now I’m on meds for a week and the side effect I’m trying to tolerate it. Thanks for you advise.

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Liliane, this is just FANTASTIC! What a GREAT article! One area I am REALLY going to email Dr. Aksamit on is the one on MAI/MAC being curable. Hmmm .. did I misunderstand him or just what!! I thought I understood him to say you could “stabilize” it but not cure MAI/MAC. Because of the importance of accuracy on this Forum I am going to forward the article to him and clarify my understanding.

Thank you SO much for this article .. I think it would be just great for each new person to read it .. it answers so concisely SO many questions and concerns. Truthfully it might be overwhelming for some people in the beginning to read it .. but in time it would be invaluable .. again .. thank you so much for the information! Hugs to you! Katherine

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Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old…we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis…they deserve better…so do we.

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