(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 Support Group.

tdrell | @tdrell | Aug 22, 2016

In reply to @ehliny "Is this blog still active? I am suffering from the chronic MAC cough and desperate for..." + (show)

I use the albuteral inhaler I use for my asthma when I have my evening coughing jag and it settles the cough somewhat.
Also did I read right...you got another Mac infection from the bronchoscopy?terri

tdrell | @tdrell | Aug 22, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

I am all signed up Paula for the conference and I started the process to be a patient at Natl Jewish Hospital.
next day 8/24/2016
Just had a data gathering phone call from NATL Jewish Hospital Nurse Laura as pre planned....the beginning of the journey to be seen there....very thorough...now l have to gather two years worth of all the testing results to submit to the Dr's who will review the records in advance....and she said will be sending their own culture kit.
stay tuned....terri

Katherine, Alumni Mentor | @katemn | Aug 22, 2016

In reply to @ehliny "Is this blog still active? I am suffering from the chronic MAC cough and desperate for..." + (show)

Terri, you are lucky you can use albuterol .. just shows how different all our bodies are! Albuterol triggered my migraines just horribly! If you are addressing this to me .. no I did not get another MAI infection .. I have been free since May 2014. It helps if you are only asking one person .. that you address it to that person .. other wise we can all hop on. Hope that clears it for you! Hugs to you! Katherine

Paula_MAC-2007 | @Paula_MAC2007 | Aug 23, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

Thanks great, Terri, that you're registered for the Denver conference and going to the Natl Jewish Hospital. Please let us know your impressions of the conference and how it all goes at the hospital for you. Best wishes!

dixer | @dixer | Aug 23, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Dr Wendi Drummond. Very knowledgable and very kind.

boomerexpert | @boomerexpert | Aug 23, 2016

In reply to @tdrell "Thank you folks for all these postings....after 2 years of coughing/ wheezing and bringing up gobs..." + (show)

Traveling tough for me w/RA so not able to get to Denver (I'm in FL). But look forward to hearing what comes of it..hopefully something useful at last rather than just more discussion.!

boomerexpert | @boomerexpert | Aug 23, 2016

In reply to @katemn "Hello 3451, no my skin did not turn bronze .. that might have been an advantage..." + (show)

If affordable for you (is for me and I'm on disability) there's many online services that will deliver ready-made meals or easy to prepare fixins' to your door! They're yummy and may help you gain weight as sounds like part of the problem is the difficulty of doing all that cooking to get a good meal into you! Schwann's is one I've used (both meals and fixins') - also protein shakes will help greatly. I think it's worth the try to first see if your weight loss is the biggest fatigue culprit before going on the drugs. Hope this helps! Terri

heathert | @heathert | Aug 23, 2016

In reply to @katemn "Hello 3451, no my skin did not turn bronze .. that might have been an advantage..." + (show)

haha @katemn each time I see your pic I will now think of bacon and ice cream. I am losing weight too so will have to get my morning and evening foods sorted, maby cheesecake and cheese on toast I think!

JanetJ | @justjanet | Aug 23, 2016

In reply to @katemn "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....." + (show)

@katemn

Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..

You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.

In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!

I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar .... we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!

Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!

I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!

Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”

Sending you Hugs, Katherine

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Hi Flib, I just checked the NTM website- http://www.ntminfo.org and there are a number of doctors that are listed as experts in Cleveland. Check it out - https://www.ntminfo.org/patients/physician-referral-list Hope that helps. Janet

JanetJ | @justjanet | Aug 23, 2016

In reply to @katemn "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....." + (show)

@katemn

Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!

I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.

It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.

I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.

Sending you Hugs, Katherine

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Katherine, I'm guilty of using ice cream to keep the pounds on too!! Hey, it works and for some reason that seems more palatable when I'm just not interested in eating. So McD's vanilla shakes (pretend they are some kind of protein shake :)), DQ's Oreo Blizzards and Haagen Daz at home. I too am not telling anyone to do this. Just fessing up. 🙂 Janet