(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

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

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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Welcome to Connect, @digmeme.
I moved your message to this existing thread about MAI/MAC where you’ll meet many others who share similar experiences and can help answer your questions.

@katemn @Paula_MAC2007 @maryke @ehliny @johnlk have you got some thoughts about @digmeme‘s experience?

Liked by digmeme

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 have been anxious to read about other people dealing with MAC. I was diagnosed in May, ’15. Tried the big 3 twice…. ghastly nauseated…ended up in the hospital. Would love to know more about this disease as my doctor seems clueless. Thanks!
Jan

Liked by digmeme

REPLY

Hello Jan,
I can offer my experience with MAC. Was misdiagnosed for 2-3 years (erroneously treated for pneumonia, asthma, etc.), so the disease really had a grip on my lungs. MAC/MAI is not a disease that is commonly suspected, even by the best internists or pulmonologists. After correct diagnosis, I too was put on the big 3 drugs, taking them everyday. Like you, I was quite nauseated. My original pulmonologist (after a year he moved to a warmer climate to practice) told me about some of his patients with MAC and how they reacted to the drugs. He wanted a commitment from me to stay on them for at least 6 months. Guess after that he felt the side effects subsided. He suggested I find my own path to taking them, which was best for me — whether all at once in the morning, spreading them out over the day, in the evening before bed. Consistency was key! He did say a few of his patients found success taking the drugs an hour before bed (with some food in their stomachs), then ‘powering down’ in bed by reading, watching TV, or meditating, etc. I tried this and it seemed to create less nausea than any other time. One unexpected side effect was that after a year the inside of my bottom teeth had turned black from coating with little ‘tar like’ bits. My dentist said that over night, the drugs were secreting out my salivary glands under my tongue, and attaching to my teeth. Was quite difficult to remove. But hard cleaning every 4-6 months takes care of it.
My pulmonologist left after a year, and I got into a new doc who locally knows the most about MAC. He works at the same large teaching hospital. The dosage of the 3 drugs is based on a patient’s weight & size, and he thought I was taking too much of one of the drugs and reduced the dosage. It reduced the nausea a little. After 4 years or so, I was feeling great and tried to go off the drugs. Five-six months later, I was very ill and my doc put me back on the 3 drugs – – but only taking them every other day since the spread of MAC had stopped. I still have to time when I take the drugs to prevent any nausea which periodically occurs especially if I am doing Barre class or Pilates soon after taking them. But I have adjusted and I am feeling so great these days! Good news is that the nausea does diminish quite a bit.
Please let me know if you have any other questions. There are quite a few people on this blog who can provide their experiences. We know what you’re going thru . . . it isn’t fun but it does get better over time. Hang in there!

Paula

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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Hello Linda @digmeme,
Welcome to this MAC/MAI group. Here’s what my pulmonologist told me about contracting MAC/MAI. Yes it’s in the air, soil, water. Many people get this, don’t know it, and get over it in several days. People with compromised immune systems were getting MAC/MAI in the 1980s and it contributed to their deaths. A new manifestation of MAC/MAI has occurred in the past 15-20 years in thin, middle aged white women, and the medical community does not know why. (Personally, I think it’s connected to hormones.) My doc says they’ve found some correlation to low Vitamin D. As to your bad bite from a child, I can’t offer an opinion whether that contributed to your MAC. I do know that when MAC/MAI is not diagnoses early, and is allowed to ‘take hold’ in your lungs, it gets really difficult to get rid of — it becomes difficult for antibiotics to penetrate the physical make-up of the bacteria which has a hard outer shell. But the drugs eventually do slow or stop the growth of the bacteria.
I am about your age and rarely ill except for sinus issues since childhood. I am on Rifampin, Ethambutol & Azithromycin — dosages for my size & weight (120 lbs). Yes, the drugs made me quite nauseous. See my post below to Jan on advice from my pulmonologist on taking the meds. I am not a good person to comment about probiotics, since I have the opposite intestinal effect from the 3 drugs – – they make my system so regular and when I did go off the drugs for 6 months, my system got really screwed up. I took probiotics to no avail.

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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My computer is down.
I am very interested in sharing with other MAC
persons! I live in Atlanta area and would LOVE to know a good MAC doctor!
Thanks. Jan

REPLY
@debbiet

My husband was just diagnosed with MAC and put on the cocktail of three drugs they give to treat the disease.
After day one on the drugs he was miserable he was fatigued couldn’t eat and was just miserable. He was suppose to be on these 6 pills three days a week . Any body have this experience

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Yes, I have had MAC twice. My 1st lung doctor told me to try some antibiotics, and if they didn’t work–we’d try some more–because I was going to be on 3 antibiotics for 2 yrs & I had to be able to tolerate them. Have him talk to his doctor about his symptoms.

REPLY

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

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

I am right there with you! I have been in the 3 drugs for 3 months and feel worse than I did before I was diagnosed! Do you use a Pulmonologist or Infection Control
Doctor? My co-pay for the Rifabutin is $180 and I am in bed 16-18 hours after taking deathly ill……for at least 15 hours! Horrible! The APN took me off of this because I developed acute bronchitis. I started back on the Clarithromycin last week 3 times a week, Ethambutol last week and dread Tuesday coming where I start the Rifabutin! This is horrible! Even thinking about just going back to my family doctor…..cannot see where this Pulmonologist has done anything to help me!

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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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

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

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????

Liked by tutti (Lisa)

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

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

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

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.

REPLY

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

REPLY

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.

REPLY
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