(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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Hey suzieapples, I’ve been thinking about you. How are you doing with your
drug therapy? I hope you are better. I get checked again in July, hope
there are no changes or I’ll have to start drig therspy too! Hope to hear
from you. Your friend Tutti

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Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won’t be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

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@cacallahan

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won’t be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

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Cacallhan…..I was diagnosed in May, 2015.  I tried twice to take the medicine and my body would not tolerate it….that does not mean your body would react the same.  Give it a try. That way you will know as many are successful.  I was and still am dealing with many other health issues and had to make the choice of one over the many others.  Fatigue and weight loss were my biggest issues with MAC.  EXTREME, DIBILITATING nausea was my issue with the Big 3 Meds.  Take care of yourself and stay tuned.  There are many good people on this site who share this weird disease.  God bless.Jan

Liked by cacallahan

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@cacallahan

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won’t be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

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Calcallahan, I am SO glad you found this supportive forum! I was diagnosed at age 64 .. I also was very afraid of the antibiotic treatment after reading so much negative on the internet .. to the point that I “refused” treatment foolishly until I was diagnosed with a 2ND very serious mycobacterium “ABSCESSUS SUBSPECIES” . Because I waited for treatment .. I then had a much more serious process of treatment. Frankly I wish I had not waited. For me personally I did have some issues .. fatigue .. sleep disturbance .. weight loss etc. BUT I have now been stable since May 2014!! YEAH!

It might help you to read through the various posts on this forum .. there is a LOT of information here on various people’s journeys. Each person must make their own decision .. each body will react differently .. adjust differently .. take a different amount of time to adjust to the meds .. BUT with a positive attitude and putting one foot in front of the other .. knowing that if NOT treated the mycobacterium will NOT go away .. it just gets worse .. it is an easier decision just to put your face to the sunshine and move forward.

Remember .. you are NOT alone .. keep coming back to this forum .. there are a LOT of kind supportive people here to help you along on your journey!

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Thank you Katherine for your advice. I am just sick about this and find myself constantly crying. I don’t usually get sick, and if I do I try to hide it especially from my son who is disabled. I just hope I am strong enough to be able to take care of y parents and my son. I just wonder what would happen if I choose not to take the meds? I will just talk to this doctor on Tuesday. Again thank you for your feedback. Bless you!

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@cacallahan

Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won’t be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16

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Hi. Thank you for your advice. I have trouble in the past with taking meds and that is one reason why I am so scared. I wonder if I will be able to take care of my parents and my son who is handicap. I am so scared that I find myself crying all the time. I will find out Tuesday more info when I go to this doctor.Thanks again. Good luck!Cheri

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Hi group, I can relate about how scary this is. I am thankful I am in the best hands at the Mayo. My mom was diagonosed with this over 20 years ago and the dr said the antiobotic treatment would be harder on her than the disease. They choose to monitor her and she never went on treatment. She is 90 years old and doing great. Everybody is different and I think the answer is to monitor it and stay on top of it if treatment is warranted. I go back to the Mayo in June to see Dr Akinsatt and have a CT scan, sputum sample and pulmonary function test. We will go from there. If we do decide treatment I have met with a pharmacy dr there that was very thorough about the drugs. 3 days a week, 3 different antibotics.
I think depression has played a part in this so we are monitoring that also.
Hang in there everyone. So glad we have this forum for support.

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@barbjh

Hi group, I can relate about how scary this is. I am thankful I am in the best hands at the Mayo. My mom was diagonosed with this over 20 years ago and the dr said the antiobotic treatment would be harder on her than the disease. They choose to monitor her and she never went on treatment. She is 90 years old and doing great. Everybody is different and I think the answer is to monitor it and stay on top of it if treatment is warranted. I go back to the Mayo in June to see Dr Akinsatt and have a CT scan, sputum sample and pulmonary function test. We will go from there. If we do decide treatment I have met with a pharmacy dr there that was very thorough about the drugs. 3 days a week, 3 different antibotics.
I think depression has played a part in this so we are monitoring that also.
Hang in there everyone. So glad we have this forum for support.

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Barbjh, this was SUCH good information for Cheri! Thank you for it! Hopefully Cheri is with a GOOD pulmonary doctor who is capable of properly monitoring her. If it was Dr. Aksamit I wouldn’t have ANY concern .. he puts it all together like a great big puzzle to decide when/if it is absolutely necessary to go on the antibiotics .. AND what mix is the best for you particular situation. He is the best! The Pharmacists at Mayo Clinic, Rochester are also excellent. I also have other meds I must take .. she along with my local Pharmacist helped me put together a daily SCHEDULE of when to take the various meds and probiotics! It was a LONG list! With food .. without food .. so many hours before vitamins .. so many hours after another medication .. it took a bit to get used to! I printed it out and taped to my medicine cabinet .. a copy in my purse .. a copy for when I traveled .. BUT it worked for 30 months .. never got severe nausea .. never got yeast infection .. worked through things and came out on the other side smiling!

Your advice was so good .. again .. thank you!

Liked by cacallahan

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@cacallahan

Thank you Katherine for your advice. I am just sick about this and find myself constantly crying. I don’t usually get sick, and if I do I try to hide it especially from my son who is disabled. I just hope I am strong enough to be able to take care of y parents and my son. I just wonder what would happen if I choose not to take the meds? I will just talk to this doctor on Tuesday. Again thank you for your feedback. Bless you!

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Cheri, keep your chin up .. the beginning of this journey is a scary one .. but trust it will get better. Figure out what “fills your cup” and DO IT!! Remember you CANNOT pour from an empty cup .. and you CANNOT give to your parents and your son when you are empty! Figure out even little ways you can fill that cup .. ways that work for you .. not anyone else .. just you. If it is a bubble bath .. a cup of coffee early in the morning before anyone else wakes up .. a book of positive thoughts read each day .. finding a local support group of caregivers that you can attend .. there are also those type online support groups (just make sure you RUN AWAY FAST .. if you find they are the “pity party” type .. you are looking for an upbeat positive supportive one!) .. calling an upbeat positive friend .. watching a funny movie with your family and LAUGH together .. laughter is GREAT medicine! .. I’m tired so can’t think of any more .. but put your thinking cap on and take good care of yourself on this shared journey! We are here right with you .. sending you hugs!

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Hello everyone,

For those newly diagnosed or others just plain scared about going on the meds, just remember two things: (1) without these meds, many of us would be in extremely serious trouble, and (2) if you find the meds making you so ill, you can always go off them — or perhaps there is an anti-nausea med you can take with them. Hang in there . . . it does get better!! But you DO need to take care of yourself. Sleep and exercise (to get your lungs working better) are critical. Even a brisk 20 minute walk every day will help. Much good advice on this site. Glad we’re here to help each other.

Paula

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@cacallahan

Thank you Katherine for your advice. I am just sick about this and find myself constantly crying. I don’t usually get sick, and if I do I try to hide it especially from my son who is disabled. I just hope I am strong enough to be able to take care of y parents and my son. I just wonder what would happen if I choose not to take the meds? I will just talk to this doctor on Tuesday. Again thank you for your feedback. Bless you!

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Hi, I was diagnosed with MAIC, about 5 years ago, and been holding off on antibiotics.(Had a lung Carcinoid tumour in left lower lobe and had a Lung lobectomy then at age 52, never smoked, I am 65 now and have multiple nodules in lungs, probably maic nodules, but being followed by Oncology for return of Carcinoid as well) I see my Respirologist every 3 or 4 months, have a chest xray at that time, and from the results of that X-ray we have the discussion to treat or to wait. Meanwhile, I try to keep active, with walking and a bit of cycling, although I have nasty arthritis and it gets tuff at times. Sometimes when the weather is clear and the air is fresh, my lungs feel pretty clear, but as the air pressure and humidity changes, I get worse, my lungs get tight and I produce alot of mucous, mostly thick pure white, with occasional nasty looking stuff. I go to massage and she does percussions on my chest, I have a vibrating belt I use occasionally, use Ventolin puffer 2 -3 times a day, and Cortisone puffer(Alvesco) once a day. But the best thing is exercise. I felt my best this past winter, when I would go up to the ski hill and walk in the clear fresh air up there. I would like to be like this other gals 90 yr old mother, who has had Maic all these years and never went on the antibiotics, because like you, I am so frightened of all the side effects.
Stay positive and somehow try to adapt to this nasty diagnosis. I was in shock, when I was told I had MAIC, in my lungs(I have what!!)

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@Paula_MAC2007

Hello everyone,

For those newly diagnosed or others just plain scared about going on the meds, just remember two things: (1) without these meds, many of us would be in extremely serious trouble, and (2) if you find the meds making you so ill, you can always go off them — or perhaps there is an anti-nausea med you can take with them. Hang in there . . . it does get better!! But you DO need to take care of yourself. Sleep and exercise (to get your lungs working better) are critical. Even a brisk 20 minute walk every day will help. Much good advice on this site. Glad we’re here to help each other.

Paula

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What 5 antibiotics are you on? For 1 year I was on 3 meds, didn’t help,
following year put on ,clarithromyacin, ehtambutol and rifabutin. That
didn’t do it. Other problems are surfacing and so I was taken off those 3
meds for now. My skin is bronze in color, everyone thinks I am “tanning”!
We have to figure what is causing that. Also have extremely dry flaky
skin and am tired and having difficulty gaining weight.
I have the bronchietatsis too. My problem, I don’t walk due to problem
feet. Wish you well.

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@barbjh

Hi group, I can relate about how scary this is. I am thankful I am in the best hands at the Mayo. My mom was diagonosed with this over 20 years ago and the dr said the antiobotic treatment would be harder on her than the disease. They choose to monitor her and she never went on treatment. She is 90 years old and doing great. Everybody is different and I think the answer is to monitor it and stay on top of it if treatment is warranted. I go back to the Mayo in June to see Dr Akinsatt and have a CT scan, sputum sample and pulmonary function test. We will go from there. If we do decide treatment I have met with a pharmacy dr there that was very thorough about the drugs. 3 days a week, 3 different antibotics.
I think depression has played a part in this so we are monitoring that also.
Hang in there everyone. So glad we have this forum for support.

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Katherine, that was very good information about the Mayo Pharmacy as I
didn’t know they would do that for you. I just was baffled because as you
said, some with food, without, can’t take this or that vitamin or probiotic
with the meds, and wait so long between. I was despondent trying to make
my own schedule. Good to read that! Thanks

Liked by cacallahan

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Jan,

With the 3 big meds as you refer to them, have you tried taking 2 early
morning, 1 an hour later, 2 at noon and 1 in the evening? I never got sick
from doing it that way.

Liked by cacallahan

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Forgot to mention, I was supposed to take 2 of the R. pill at one time, 2
of the C. pill only at 2 different times, 1 early morning an hour after I
took the 2 R pills and the last one in the evening, and 2 of the E pill at
noon. It was the recommended dosage to take for this MAC. It is very
strong stuff.

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