(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

@brigby sorry I am unable to help as I have not has absessus. I have been achy on and off but thought it was my medication or anxiety doing it. I hope you can get this sorted soon.

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@boomerexpert

@brigby I don't as yet have abscessus so can't provide info on that, but sounds like you are symptomatic…I have none…no cough…no flu-like body aches…etc. so truly asymptomatic thus not in need of treatment at this time…

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@boomerexpert Well then that’s great, you go, girl!!

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@heathert

@brigby sorry I am unable to help as I have not has absessus. I have been achy on and off but thought it was my medication or anxiety doing it. I hope you can get this sorted soon.

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@heathert thanks to you both for your responses. God Bless and keep you!

Liked by heathert

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@pkayh

Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don’t seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It’s the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities – Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don’t I will be able to do less and less.

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@pkayh, Pat, everything you wrote here sounds just like me; right down to the painting and cooking. And, gratefully, my husband loves to cook also.

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@america

Thanks I going to the doctor today. I hope he can figure what’s going on. Thanks Rita

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@xfirerose @america @boomerexpert @jkiemen I hope Rita and others you have found a way to treat the oral thrush in the mouth an throat. Yes it seems we really have to stay away from the drugs that interact with our MAC meds. Please let us know how you are going now.
I looked up some natural alternatives that might help, and checked them against the Big 3 to make sure they are okay:
1. swabbing inside the mouth with pure, virgin coconut oil (caprylic acid is the active ingredient)
2. yogurt swabs of the oral area/ (needs to be plain yoghurt)
3. use vinegar diluted in water (start with very dilute, using a lot more water) — sip this from a cup and gargle or swish around in your mouth for a while, then spit out.

Liked by america

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I was diagnosed with MAC last month. I am on meds 3 times a week. Sometimes I feel terrible. So tired and sleepy. I don't know how I'm going to do this for a year.

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@extratiredalway …It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?

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@anniepie

@xfirerose @america @boomerexpert @jkiemen I hope Rita and others you have found a way to treat the oral thrush in the mouth an throat. Yes it seems we really have to stay away from the drugs that interact with our MAC meds. Please let us know how you are going now.
I looked up some natural alternatives that might help, and checked them against the Big 3 to make sure they are okay:
1. swabbing inside the mouth with pure, virgin coconut oil (caprylic acid is the active ingredient)
2. yogurt swabs of the oral area/ (needs to be plain yoghurt)
3. use vinegar diluted in water (start with very dilute, using a lot more water) — sip this from a cup and gargle or swish around in your mouth for a while, then spit out.

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Thanks for the information! I will try that.

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@egayle187

@extratiredalway …It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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Thank you for your sound advice. I will surely follow it since you have already traveled down this path.

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@Spencersoc. I have been on daily Amikacin since Nov 12. Also on the big 3 and Xopenex, Saline, and vest vibration twice daily. Amikacin is a lot of maintenance and has side effects most notably a sore throat and temporary loss of voice. Since this is a new drug most doctors are getting more information from me through this blog and through my experience than they are able to provide themselves.

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@egayle187

@extratiredalway …It will get better.Listen to your body. Rest when you are tired. You may have to cut back on activities until the MAC has been wiped out, but you will feel better.After awhile I felt better on non-med days and planned my schedule accordingly.Please search through the discussion groups; they will help you find others with similar situations. I've been free of MAC for 4 years now and off oxygen, too.

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@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are feeling, I am so tired too and put on the big 3 just recently – good luck to all of us

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@anniepie

@egayle187 Thanks so much for this advice from me too. @extratiredalway I know how you are feeling, I am so tired too and put on the big 3 just recently – good luck to all of us

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Yes good luck to us all. I am so pleased that I stumbled across this site. I felt so alone dealing with my issues. Knowing that there are others going through the same problems makes me feel less doomed.

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@spencersok

My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?

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Does anyone suffer from severe depression with sarcoidosis. Jane Brown

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@macjane

Does anyone suffer from severe depression with sarcoidosis. Jane Brown

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My husband does and is on two antidepressants.

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