(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

@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn’t get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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Elaine…so that is how progress (hopfully) is done..sequential chest xrays? how convenient to have the expertise from your Professional expertise.. Scary also.. All my chest xrays are negative..CAT scans also…only the bronchial washings from the bronchoscopy gave the answer that l had MAC….and the cough/ mucus symptom of a 2 year duration. So if and when l go on the meds….will my…hopeful progress….only be measured when the cough/mucus leaves and l have a repeat bronchoscopy and specimens obtained from that…looking to see if MAC still there??
thanks
terri D

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@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn’t get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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I also had sputum cultures. After 3 months of treatment, cultures negative
for bacteria. Had culture done after 1 year still negative. I am 2 weeks
off medicine. Will return for X-ray in I month. I have not asked about
possibility of relapse or how rapidly it grows in that case.
EK

Liked by tdrell

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@kaystrand

Re the conference.

Perhaps we need some statistical data gathered to try to help understand why some people get MAC and most don’t. There must be more commonalities to all of this that is being missed. If we knew the cause, perhaps a better cure would become more apparent. Perhaps reoccurance could be stopped.

We are getting the same drugs they’ve been using to treat NTMs for years with no advances. There is no critical mass to our numbers, and so no money in trying to figure this out.
I think a better look at the possibity of “hidden” MAC, all the folks walking around with a cough, tired, not yet diagnosed. Also, they talk 8% growth rate. As our population ages with the boomers, is this growth rate perhaps much higher?

What about surgery. It’s seems to be a pretty sure cure. Why isn’t more done? Maybe too expensive or only allowed if drugs fail? There are some people on here MAC free for a few years, but let’s face it, with drugs only it frequently comes back. Surgery seems to be an endgame for the disease. I’d like to get rid of this for my future years, not live on drugs that have many side effects long and short term.

It seems someone must be asking these questions and gathering info for the conference, but perhaps not. I cannot go due to a previous trip plan.

I’m sure someone going to the conference with MAC can better formulate these ideas.

Thanks. Comments and additions welcome.

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Kay….l printed out this excellent list of questions to take with me to the conference…also added the great additional ones from Boomerexpert and Paula.and Heather…
terri D

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@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn’t get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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EK
Did you have CT scans or X-rays?
What meds are you taking? Sorry if you’ve already said that!

They give me sputum cultures and ct scans. Hoping mine clears up, and all of us who are taking all of these meds! Good to hear your cultures are negative after 3 months.
Kay S

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@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn’t get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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I had an X-ray at my regular doctor because after 3 weeks of seeing him and taking antibiotics, my wbc was elevated. Chest X-ray then revealed large accumulation of infection. I was sent to hospital for 10 days of IV antibiotics and followed by 10 more days IV antibiotics at home. A CT scan was done in hospital. Kept seeing that pulmonologist for follow up X-rays every week. When no improvement, I went back to regular dr. And asked him to refer me to Vanderbilt. In the meantime I found out I had tested positive for MAC while in hospital but the results had been overlooked. From the records I carried, Vanderbilt called my regular Doctor and I was referred for treatment to another doctor. One month later, I finally was started on the treatment. 900 mg Ethambutol, 600 mg Rifabutin and 200 mg Azithromycin everyday. After 1 month of treatment, there was a big improvement on X-ray. I completed 15 months of treatment 2 weeks ago. As I look back, I think this had been going on for about 6 months before I realized something was wrong. Circumstances kept me from realizing that I was sick.

Liked by tdrell

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@oceanbliss

Hi Katherine, i was just diagnosed with MAC this July 2015 and was told it is everywhere in my lungs and there was no point in seeing a infectious disease Doctor because all his patients he had sent to them were told to go home the treatment was to harsh and they wouldn’t get through it. I found your messages of hope called mayo clinic and could not get in to see your Doctor until 2015.so i made appointment with Dr. Vassalo for Sept 22 2015. i just got over pneumonia and now have another infection starting so i thought i should take this or do you think its worth waiting for your Dr? Have you heard of Dr. Vassalo?
Thanks Katherine, this is uncharted territory for me.

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If your chest X-rays are negative, they will have to rely on sputum cultures. I guess if you can produce a collection, they will have to get from bronchoscope.

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Best non-invasive test is CAT scan or MRI – will show light areas in the
lungs that can indicate bronchiectasis and MAC..

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I have had a CAT scan, an MRI, a PET scan and a lung biopsy. I got the results Friday which is mycobacterium avium intracellulare. My doctor started me on 5 antibiotics for 18 months, which I take Monday, Wednesday, and Friday. Seems like it will be a long haul.

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Hi jilligirl, what antibiotics are you on?

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right now I am taking Rifampin, Ethambutol, and Azithromycin. I pick up 2 more on Wednesday but I don’t know what they are yet.

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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I too have been diagnosed with Mac. I’ve been on meds for six months. I had a CT scan few weeks ago. Dr really didn’t give me a straight answer if the same or worse. He was more concerned with my PFT test stating my chest was a lot tighter which I haven’t noticed. How soon can you tell if meds are working? Do you see an infectious dr in addition to a pulmonary dr?
I’m wanting to find someone who specializes in Mac. I live in Lake Mary Fl

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wow jilligirl, thats a few, please let me know what they are when you get them. I was on big 3 only 3 days a week for 18 mths but I feel that I should have been on more as it diddnt do a great deal so now doing daily and adding amakacin. I always fing the docs dont give much information away easily, you really have to be direct and get the answer you want. I also have intracellulare.

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I thought this was very interesting, alot of MAC types grow in biofilms, so make them resistant to antibiotics as they cannot penetrate them, this article has found a way to breakdown those biofilms so that antibiotics can work again .wonder if anything has happened with this lately as it was a while ago http://aac.asm.org/content/54/5/2112.full

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Cathy, there are quite a few Floridians on this forum who can make a recommendation. I’m tagging @dixer @boomerexpert @coylemel333. You can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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If asking me, yes.

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