(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

@katemn

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

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Suzie, you were SO smart to contact your Pulmonologist! Although I always caution everyone that each of us will NOT get each of the side effects of each of the drugs .. it is absolutely part of our “due diligence” to be aware of the side effects PRIOR to going on ANY new drug so that we are aware of what if any side effects to be aware of. There are minor .. AND MAJOR ones listed .. one that you DEFINITELY contact your doctor for! If you google it .. Symptoms of anaphylaxis include hives, facial or throat swelling, wheezing .. 2o when the second day your throat closed up .. that was a symptom. WOW! .. then the hives was your body saying TAKE CARE OF ME!!

Suzie, if you read this Forum fully you will see I am a great one for Due Diligence and knowing what is right for your own body. But work with your Doctor .. usually you can come up with a combination that can knock out the MAC .. but yet will work with your own body. Don’t despair .. if you just keep at it .. you CAN come out at the end of the journey that we all are on. I lost 18% of my body weight through the journey .. did various things to get it back on but it did work.

What are you doing now if that was in 02/16? How are you doing? For me the Rifampin was certainly not my favorite .. caused weird feelings in my legs that affected my sleep .. I know that is odd but when I stopped the treatment .. my legs are fine now! As I said .. each of our bodies are different .. that is why we just have to keep on trying until we hit that magic spot that works for us! Sending you a Hug! Katherine

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

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HI Paula and all, do you have any other lung diseases or bronchetasis? I note that the inhalers did not help you Paula(I have just been put on one), I too get tight chested with cold temperatures and frosty, dewy, mornings,and exertion, do you still get this?My specialist says my MAC is minimal and should not cause this. Have you ever been diagnosed with asthma or allergies?

REPLY
@heathert

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

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Hi Katherine, was your MAC just nodular or did you have a cavity? Did the big 3 get rid of the MAI quickly or did it take time? Thanks for all your help.

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

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I have been diagnosed with seasonal allergies. I cant stand too much heat, too much cold, i have been taking zytec and using inhalers.

REPLY

I invite all interested to join an adjunctive group I’ve just started in the hope of encouraging/inspiring us to begin advocating for better/more effective treatments via stepped up research: https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

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Hi sophie yes I am the same, have been on zyrtec and alanase for a few years and just starting asthma in halers, do you find the inhalers are working?

REPLY

Thanks for your help and support, C. I too look forward to participation – already one terrific idea, and one that was sent to the FDA!
One minor adjustment that I wanted to make but was unable to edit once discussion was started; perhaps you can do this from your end: I neglected to include MAC/MAI in the discussion heading so folk know precisely what condition we’re talking about…possible for you to do it?
T

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Yes the inhaler tends to help.

REPLY
@boomerexpert

Thanks for your help and support, C. I too look forward to participation – already one terrific idea, and one that was sent to the FDA!
One minor adjustment that I wanted to make but was unable to edit once discussion was started; perhaps you can do this from your end: I neglected to include MAC/MAI in the discussion heading so folk know precisely what condition we’re talking about…possible for you to do it?
T

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Hi boomerexpert, I also think we have alot in common like menopause,lifelong allergies, asthma,anxiety spa pools, famiy lung problems etc do you think it would be a good place for us to all list think what may contribiute to out MAC or would it be a bit off topic?

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Hello @heathert,

Do I have other lung diseases? Yes, bronchetasis.
I’ve had NTM/MAC for 8-10 years, and only had a 4 month period this winter where I periodically had a tight chest, and was unusually fatigued – when I exercised. Had a stress test and am fine. Very cold temperatures have caused me to have an outrageous cough, although I rarely cough anymore. I live in a cold winter climate so I keep my mouth covered when walking. But worse for me is humidity, high dew points, & moisture. My lungs tend to close up; I find myself trying to get air in my lungs and conscious of my breathing pattern being out of whack.

My NTM/MAC is not minimal. But it seems to be under control, not growing a lot (I hope – I see my pulmonologist soon). For the first 2-3 years, I was misdiagnosed with pneumonia, then allergies (never had allergies!) then pneumonia again. Was really NTM/MAC progressing in my lungs.

Most days, I forget I have NTM/MAC … honest! I take my meds, go to exercise, and get on with the rest of my day. Very few people know I have a chronic disease. It has slowed me down, for sure. I’ve changed my lifestyle and spend more time resting and sleeping. And don’t accept as many invitations as before. I am high energy, go go, with lots of different interests and things I am (was?) involved in. Unlike before, now I say ‘No’ to requests. Life is good . . . but I was quite ill when diagnosed with NTM/MAC. People looked at me and knew something was wrong.

Paula

REPLY
@boomerexpert

Thanks for your help and support, C. I too look forward to participation – already one terrific idea, and one that was sent to the FDA!
One minor adjustment that I wanted to make but was unable to edit once discussion was started; perhaps you can do this from your end: I neglected to include MAC/MAI in the discussion heading so folk know precisely what condition we’re talking about…possible for you to do it?
T

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@heartert, I sure would like to know what is the common thread among all of us with this disease. I live in SE Wisconsin, one of the 7 high risk areas in the US for NTM/MAC … and the only place that is non-coastal. Go figure. I wonder if the CDC has collected data on people who have contracted NTM over the past 10 years, their demographics, other compromising diseases, life style, etc.

REPLY
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Thanks Paula very helpfull!

It is winter here and we are getting cold frosty mornings with wet inside windows, and warm days and I am finding that I am getting the tight chest feeling also, affecting my exercise and feeling tired, will try the scarf and may get in a home ventilation unit to prevent the window condensation.

I have had allergies all my life and feel this could be a bit of asthma also, changes in temp of more than 10deg seem to affect me.

REPLY
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