(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 group.

@e345I . . . I’m not in the study and this is the first I’ve heard about it. I live in Wisconsin, about 6 hours from Mayo Clinic. But I go to an excellent teaching hospital here and they could easily do the monthly follow-up for Mayo. I’d REALLY LIKE TO GET IN A STUDY with lots of people with a MAC or MAI diagnosis, to see if THERE ARE ANY COMMON VARIABLES THAT MAY PROVIDE A ‘HOW’ the majority of us got this.

REPLY
@Paula_MAC2007

@e345I . . . I’m not in the study and this is the first I’ve heard about it. I live in Wisconsin, about 6 hours from Mayo Clinic. But I go to an excellent teaching hospital here and they could easily do the monthly follow-up for Mayo. I’d REALLY LIKE TO GET IN A STUDY with lots of people with a MAC or MAI diagnosis, to see if THERE ARE ANY COMMON VARIABLES THAT MAY PROVIDE A ‘HOW’ the majority of us got this.

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When I first went to Mayo, I was told of the study. I had the disease for
several years before I got to the right doctor. My understanding was that
there were 3 different studies, and you didn’t know which one you would be
doing. One was something with a neubulizer, placebo pills and the real
pills. Not even the doctor would know which test you were taking. Since we
were 5 hours away and it was difficult during the winter months, we weren’t
asked to participate. I was very hesitant to do it.

In another post I mentioned the article I read about that fair skinned
women in their early 60’s who lived on a farm around farm animals were most
likely to develop MAC. I lived on a farm since 1961. Worked with cattle,
hogs, sheep, and chickens and did a lot of gardening. I think this is how
I got it. Had the chronic cough for years. More problems have developed.
I have lost a lot of weight, no appetite, tired all the time and my skin
turned bronze in color for a year now. Ironic, my twin sister who lives
in a city and smokes, never got the disease. I never smoked! Thanks for
listening.

REPLY
@heathert

Thank you so much for your help Katherine, I have suffered hayfever allergies all my life,but as soon as I read “reactive airway disease” it rung many bells with me, I cough, get tight chested and cant expell all my breath out, when the temperature droops by 10 deg, (esp around 2am) and in cold air when walking or exercising, and when when emotionally stressed, and if I suddenly run, I am going to my doc to discuss this, I have had this all my life, thank you so much! for the coughing early morn in bed I breathe under the sheet. I also suffered alot from nasal drip and found cutting back on dairy has helped alot. It would be interesting to see how many others on this forum suffer from these.

I thought about the boiling water situation, and realised that it is creating steam which is not good for me so may get a pressure cooker and take it out side to let steam out but bacteria should be dead by then anyway, I read about it under taking precautions to prevent reinfection with MAC/MI, it was in the National Lung Institue pages http://rarediseases.org/rare-diseases/nontuberculous-mycobacterial-lung-disease/ then investigated further they say at 55 deg c it takes 20 mins to kill them I think. As we are prone to getting this infection I will try to avoid it where I can(if I can clear it in the first place), they also say to bathe instead of showering, so I do with the window open, and wear a mask when gardening and bathing in warm water.

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I don’t know if this is going to help anyone BUT .. I don’t have a clue WHY it help my coughing .. if it is the Reactive Airway Disease .. the Bronchiectasis or just what .. I just know it helps my coughing so I don’t ask why .. I just have an “attitude of gratitude”!

Years ago I purchased this item so that when I traveled it would help keep my immediate surrounding air “clean” while flying because I always seemed to get a cold when flying because of the recirculated air. Of course that has improved over the years .. BUT I purchased this item and always wore it around my neck while flying. Air Supply Mini-Mate Personal Ionic Air Purifier $51.38
Virus and Bacteria incinerated by corona discharge
• 120 trillion ions per/sec. output. Ozone output .028 ppm
• Destroys odors, chemical contaminants and dust

Then after I got all these lung issues .. I accidentally found out while flying that this little unit also helped my coughing! For whatever reason .. I am VERY affected by “close spaces” .. automobiles .. theatres .. tight areas in restaurants etc. I will immediately start coughing. It is SO embarrassing. People are so kind .. offering lozenges .. etc. I for years have immediately mentioned that I “have a lung issue .. that I do not have the flu .. that what I have is not contagious”. I absolutely do NOT want people worried that I am going to get them sick! But if I start this little purifier quickly enough .. usually the coughing will subside! Recently I have even gotten one to put by my bedside .. because for whatever reason I cough a LOT when I first go to bed. Amazingly I have found it has even helped at bed time .. go figure!

As I said .. I don’t have a clue why .. what or where. It just works for me. Going to pass it one in case it might work for someone else!

REPLY
@digmeme

I am NEW to this MAI/MAC “stuff”. After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol…still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind……………….I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it’s from birds, soil, water…..BUT here is the deal. Seeing as though I have never been sick……I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems “questionable” to me and my family if there is any way this disease could have been caused by this boy’s bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda

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Linda, I am SO sorry you are going through all this! What a rip! Everyone is so different in how this works for their body. Read through the various posts .. you will pick up SO much good information!

For myself, you will read I was on 4-5 antibiotics for 30 months. What I did was rotate 3 different Probiotics DAILY .. I looked for the Probiotic with the MOST billions! By rotating 3 different ones I was able to get various strains of Probiotics. AND in 30 months by doing this I did not get one single yeast infection!

“My major question, of course, is how I got this stuff!”
Linda, I am afraid you will NOT find a “smoking gun” in terms of a cause for MAI/MAC. What I have been told .. I am paraphrasing .. is that because it is a relatively rare disease there is little money for research. Thus they know that mycobacterium is all over our bodies .. in the soil .. in the water .. BUT it is NOT supposed to be in our lungs. BUT couples can garden together for 20 years .. shower in the same water for 20 year .. one will get the disease .. and the other will not. SO .. is there both an environmental AND a genetic factor? My guess is Yes! As we have found with so many other things. But right now we just don’t know. If I was you .. I would Just “Put my energy into what I can control .. and let go of what I can’t control”. ie .. put your energy into getting healthy and not worry about how you got it.

Linda, keep coming back to this forum .. read to gain knowledge as well as support .. there are some good people on the forum .. join us on this shared journey .. we will ALL come out just fine! I have been in remission since May 2015 and am doing just great .. just stay positive and stay happy!

REPLY
@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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Both Suzie and Digmeme, I can ONLY speak for myself .. BUT based on what you are going through .. I would only ask if your M.D. is WELL VERSED in MAI/MAC? Not every Pulmonologist is knowledgeable about MAI/MAC! It would scare the dickens out of me to go through this process if my hand had not been held by a doctor who specialized in MAI/MAC! I know they are hard to find because our disease is not that common .. but the drugs we must take are also not that common. So I would just say .. do your due diligence .. make sure your doctor is at the top of their game on your disease .. and remember that NO ONE cares about your body the way you MUST! You are given one body for this life time .. and you must take care of it like you would your child. Hope I don’t sound like a Mom/Grammy .. but that is what I am .. can’t help it! I just feel bad .. what you are going through! Sending you hugs!

REPLY
@janovr

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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Jan, It sound as if you are going to create an MAI/MAC support group. I hope I am not speaking out of turn .. but I will tell you about my personal experience. When I was first diagnosed I was like a sponge .. I was SO eager to understand what was happening to my body and what MAI/MAC was all about .. and this was before I had found this forum. So I googled and found a MAI/MAC support group in my Metropolitan area. I attended two times.

After the second time I discussed it with my husband and decided I was NEVER going back! Why? Because I realized I came back each time very depressed. Why? Because for whatever reason I came home feeling that the attendees “had BECOME THEIR DISEASE”! And I was DETERMINDED that MAI/MAC was just going to be a PART of who I was .. and a VERY MINOR piece of who I was. That I absolutely was NOT going to focus on it .. that I would deal with it when I HAD to ..but otherwise I was going to continue to live my life to the fullest and be as happy and healthy as I possibly could.

That I would have an attitude of gratitude for all the good things I had in my life and not dwell on what I didn’t have. So I would just say .. in your meeting .. keep it upbeat and positive .. there are people in the world who have it SO much worse than we do! There again .. hope I am not speaking out of line .. I want us all to stay positive .. healthy and happy!

UPDATE:
Thank you for your “like” on my thoughts on a MAI/MAC Support Group. Truthfully I was a bit afraid to weigh in on the subject .. but I was fearful of a potential fall out of a “pity party” like I found when I went to my local Support Group. Our forum really tries to be supportive .. upbeat and positive .. to help each other on our journey .. that is why I keep coming back! Thank you all for all your supportive notes to each other!

REPLY
@suzieapples

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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Suzie, just keep coming back to the forum .. you are NOT isolated .. we are all here for each other in this journey!

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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Hello Barb, SO glad you got into Dr. Aksamit .. he is just wonderful! You can just totally trust him to tell you when/if you should start the drug therapy. Don’t be afraid of it .. read the various threads .. you will see mine. You will see that I foolishly held off the therapy because I believed all the “stuff” about the side affects and thought that surely I would get them all! Nope! Each body and individual are so different .. in retrospect I did so well. Sure it was not a piece of cake .. I had to sleep 10 hours a night and lost weight .. had sleep disturbances .. BUT I am now in remission.

Just go with the flow .. being single .. depend on the people who care about you .. don’t pretend to be brave all the time .. let people in .. let people take care of you emotionally. Stay on this forum .. good people here .. we are all on the same journey! Sending you a hug!

REPLY
@digmeme

I am NEW to this MAI/MAC “stuff”. After nearly 9 months of suffering with what they thought was pneumonia and sinus-related illnesses my family doctor assumed since I was a school teacher I had been tested for TB each year. This is no longer required in the State of AR and when he did a TB test it was positive. I was immediately referred to our State Health Department who sent cultures in and I was diagnoed with MAI/MAC. This stuff is horrible! I began a regimen of 3 drugs 3 times per week and I did fine January & February on Rifampin, Clarithromycin and Ethambutol…still had bouts of nausea and feeling like I had the flu BUT NOTHING like I had when the Pulmonologist changed me from Rifampin to Rifabutin on March 8. I laid in bed screaming with leg/foot/toe cramps, had 6-8 layers of covers and heavy clothing on to keep warm, etc. Finally a week ago I called the Pulmonologist on call who took me off everything. I went in on Monday of this week for blood work and went back on Tuesday to see the APN, who was wonderful. She did a chest x-ray and I now have Acute Bronchitis and I am OFF the 3 meds and taking my last tablet of Levaquin today. Keep in mind……………….I am 65 and have NEVER been sick, other than a yearly sinus infection. Now I have been sick for a year! My major question, of course, is how I got this stuff! I know it’s from birds, soil, water…..BUT here is the deal. Seeing as though I have never been sick……I was bite by an autistic student at our school in December, 2014. BAD BITE! To the extent that my hand was broken and I have had to have surgery to remove scar tissue, etc. in October of 2015. It just seems “questionable” to me and my family if there is any way this disease could have been caused by this boy’s bite. He has very unsanitary habits and he literally tore my hand open and even broken a booth off in my hand. I am at a total loss how I got this horrible stuff. Do you all that have this take Priobiotics, supplements, etc. I am ready to try anything to get well. I have to start up the meds one at a time for a week sometime later this week and I dread this so much! I know that my Pulmonologist says no herbs or herbal drinks while I am on the meds. IF anyone out there can refer me to anyone who might have the answer if this is bite related please respond. I have several nurse friends who are leaning in this direction but my Pulmonologist refused to even listen to me about this being related. Just seems strange that I have never been sick and 4 months after a horrible bite I get deathly ill. I look forward to hearing any comments. Thank you so much! Linda

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I can vouch for the fact that 2 people who live together and work in the
same environment, one can get the MAC and the other not. Haven’t found it
to be genetic. Surprised to see how many people have it. A lot of people
have never heard of it before.

REPLY
@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

Jump to this post

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

REPLY

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

REPLY
@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

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