(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

@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I’m having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I’ve always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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Susie I so identify with you. Tried the meds twice. Ended up in the hospital twice. I live in the Atlanta area and we have our first support group meeting on the 24th. I am anxious to hear how others cope with this crazy disease that no one has ever heard of! I will report. Jan

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@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I’m having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I’ve always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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Please post the things you find out at your meeting please! This is crazy that there are so many with this stuff and no one has solid answers! Thanks! I am still soooooo puzzled how I got this……..I have NEVER been sick and it is still a mystery why I got soooo sick……3 1/2 months after being bite on my left hand (actually broke my hand) I get this crud. Did this biter carry something that was transmitted to me????

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@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I’m having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I’ve always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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I will plan to be there and will tell Mike, also.
Thanks!

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@suzieapples

Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I’m having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I’ve always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.

Sent from my iPad

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So sorry to hear how sick the meds are making you. I was diagnosed 6mos
ago, only symptom I had was coughed up small amount of blood. My pulmonary
and infectious diease docs are just checking me every 3mos. I dread the
thought of having to start on meds. I feel perfectly fine. Can’t believe I
have this! Prayers for you, hope theses side effects pass soon.

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Great ! Make sure we connect. Have no idea how many will attend.
Looking forward to seeing all us sickos! Haha
Jan

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Thank you for your response Tutti. My situation is similar to yours, I had started coughing up blood, other than that I felt healthy. The meds have completely depleted my energy level, not to mention all foods now taste salty making it difficult to eat much or keep it down. The hives have spread to every inch of me, except my face. Thank you for that.
I’m seeing my pulmonologist today and plan on asking for a reduction or at least spacing the meds out to three days a week. I understand that some people are able to do that. I wish you the best with this, it came as a shock to me also. Do I understand that your Dr did not immediately start you on the drugs. If thats the case, I’d like to hear more about it.
Would like to find a support group in the South Florida area, feeling pretty isolated right now.

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@barbjh

Hello, I am new to this but was diagnosed this last summer with the MAC infection, they found nodules in my lungs that were consistent with an atypical infection. After final getting a sputum sample it grew staph and MAC infection. I was feeling wiped out all the time and losing weight. I cough sometimes but not a lot at this time. I live in MN and saw doctors in Minneapolis and after reading information I decided to go to the Mayo clinic.
Katherine you were right about Timothy Aksamit. He seems very knowledgeable and trust him completely. I am so lucky to have the Mayo clinic so close by. They are amazing.
We are holding off the drug treatment for now….but it may be in my future.
I just turned 60 years old and am single so the idea of this wearing me down is kind of depressing. This is the biggest hurdle for me.
That is why this forum is a great idea. Not many people know about MAC. I just saw my dermatologist and she actually knew all about, that surprised me.
I will write more later, tonight I am dragging.

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I HAVE HAD MAC FOR TWO YEARS OR MORE

SINCE I DECIDED IT WAS NO BIG DEAL WITH ME I AM DOING VERY WELL

AS I AM 86 YEARS OLD I DECIDED AGAINST ANTIBIOTIC TREATEMENT

MY SPECIALIST THINKS THAT IS AN OK IDEA AND WILL MONITOR MY XRAY EVERY 6
MONTHS

SO THE BIG THING AS I SEE IT IS TO DECIDE THAT I AM JUST FINE EACH DAY AND
LIVE A HEALTHY AND ACTIVE LIFE AS BEFITTING MY AGE

I AM ALLREADY ON 4 RX EACH DAY FOR HEART AND OTHER CONDITIONS AND THAT IS
ENOUGH OF THAT STUFF

WORKS FOR ME

JOHN KITE BC CANADA

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Hello, I am new to this but was diagnosed this last summer with the MAC infection, they found nodules in my lungs that were consistent with an atypical infection. After final getting a sputum sample it grew staph and MAC infection. I was feeling wiped out all the time and losing weight. I cough sometimes but not a lot at this time. I live in MN and saw doctors in Minneapolis and after reading information I decided to go to the Mayo clinic.
Katherine you were right about Timothy Aksamit. He seems very knowledgeable and trust him completely. I am so lucky to have the Mayo clinic so close by. They are amazing.
We are holding off the drug treatment for now….but it may be in my future.
I just turned 60 years old and am single so the idea of this wearing me down is kind of depressing. This is the biggest hurdle for me.
That is why this forum is a great idea. Not many people know about MAC. I just saw my dermatologist and she actually knew all about, that surprised me.
I will write more later, tonight I am dragging.

REPLY
@barbjh

Hello, I am new to this but was diagnosed this last summer with the MAC infection, they found nodules in my lungs that were consistent with an atypical infection. After final getting a sputum sample it grew staph and MAC infection. I was feeling wiped out all the time and losing weight. I cough sometimes but not a lot at this time. I live in MN and saw doctors in Minneapolis and after reading information I decided to go to the Mayo clinic.
Katherine you were right about Timothy Aksamit. He seems very knowledgeable and trust him completely. I am so lucky to have the Mayo clinic so close by. They are amazing.
We are holding off the drug treatment for now….but it may be in my future.
I just turned 60 years old and am single so the idea of this wearing me down is kind of depressing. This is the biggest hurdle for me.
That is why this forum is a great idea. Not many people know about MAC. I just saw my dermatologist and she actually knew all about, that surprised me.
I will write more later, tonight I am dragging.

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YAY FOR YOU! I feel the same way! Tried them twice, ended up in the hospital both times!
Blessings !

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johnlk, I’m glad you’re doing OK without the meds.

People are different — I think it all depends on the severity of MAC and the spread of the infection in each individual. The 3 drug regime stops the spread of the disease – mine has required 2 lung biopsies and 1 lavage (washing of the lung and suctioning back the liquid materials for analysis) and the drugs to stop the spread of MAC. It’s been at least 8 years. It does get better over time, but I don’t think it’s curable. I got this in my late 50s . . . my pulmonologist said the latest manifestation of MAC over the past 20 years was in thin, middle aged, white women (that’s me) — sounds like hormones may play a part of this.

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Were you part of the test study that started last fall of 2015 and goes for about 2 years? I believe you have to go to Mayo each month to see how you are doing?

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@suttonmac2009

New to the site. My story is similiar to many others. Was diagnosed in 2009 after coughing blood. First was told I had phemonia and bronchietasis, was given AB and sent home. Took over a year of different Dr’s to agree to CT scan. I was on the 3 drugs for 2 years, seemed stable, they took me off meds, MAC came back after 6 months, stable after a year, then went to 3 days a week only, good for another year, then it came back again. Now we’re probably going back on every day. Most times I feel pretty good. Never thought I’d be on these drugs for over 6 years. I know there are worst thing to have but it’s frustrating because most people have never heard of this nor I ever meet anyone who has had MAC. I read you were wondering what commonality MAC patients have, my suspicion is it may have some relationship to menopause hormone depletion. About the same time I had MAC symtoms I suffered hair loss and was told I needed hormone therapy since my levels were so low. Perhaps the lack of hormones create an immune disorder or very low resistance to infection. Just a though. Anyways, look forward to continuing everyone”s progress and stories.
Thanks for listening.

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Hi Shelby, I too am new to this site. My daughter found it for me. I have MAC and bronchietasis. Was diagnosed 2 1/2 yrs ago. I did get into Mayo Clinic and luckily got Dr. Aksamit, he is the best! So kind and knowledgeable. I had the dry cough for years, then after being on medications, I got so very tired, just wanted to sleep, no energy, no appetite, lost a lot of weight. My skin turned bronze so I am temporary off the 3 meds for a short time. They check everything at Mayo. I read that women in their late 60’s and are fair skin, light hair, get MAC more easily than darker skin women. Also that it can come from being around farm animals, soil, water and birds. I have a twin sister who has not gotten the disease. She lives in a big city. I live on a farm since 1961 and been very active working cattle, hogs, sheep and chickens besides gardening. I think that is how I got mine. Of course I don’t do that work anymore, for 5 years probably. Still live on the farm. However at 76, and low energy, I hire someone to
clean my house. Never did that before. I never associated the infection to lack of hormones. Also, the meds never made me sick. I never had any hair loss, a lot of thinning though. So many different problems I have been reading about. Thanks for listening.

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