(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

@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can’t believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I’m glad to find out from your forum that I’m not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn’t as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn’t thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we’d wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I’d rather not on meds if I didn’t have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I’m now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

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@katemn Thanks again, Katherine, for all you do for the forum that pulls us together and helps us form the kind of comradery that we are not able to find elsewhere. I totally agree with you. We can’t let this disease get us down. Love your advice which can’t come from anyone who has not been through what we have been through, no matter how much they love us. I’m a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right. At least this time around, there was no big scare and the pit in my stomach as I already know what is going on with me. That is actually a very good feeling. Have a great day. Will keep everybody posted of my progress.

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@katemn

@ling123 Ling, I just found this post from 2016 .. hope these Members jump in with some hints/help. Hugs! Katherine

“For that much blood loss I think it’s worth another visit. I’m also tagging @suzieapples, @ehliny, @melissa23, and @suttonmac2009 who have all written in other MAC discussions about coughing up blood.”

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Good to hear. That is exactly the kind of things you don’t get from anywhere else: exchange of information and experiences. Your reply is making my day.

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@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can’t believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I’m glad to find out from your forum that I’m not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn’t as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn’t thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we’d wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I’d rather not on meds if I didn’t have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I’m now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

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@ling123, Ling .. THIS is you and MANY people’s answer in a nutshell! A GREAT philosophy for those of us with our health issues to live by .. love your philosophy! ” I’m a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right.’ Do keep us posted .. AND jump in when you see a newcomer that you might help .. there is always someone that you are ONE step ahead of on our shared journey! Hugs to you! Katherine

Liked by chinasmom, ling123

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@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can’t believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I’m glad to find out from your forum that I’m not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn’t as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn’t thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we’d wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I’d rather not on meds if I didn’t have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I’m now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

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Hugs right back. 🙂

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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@becky33, thank you for a prompt response and yes, please, i would like Dr Anderson’s information. Im shocked at all the wonderful responses I’ve been getting. You might want to have your thyroid checked . Some times our antibiotics can affect thyroid hormone levels and cause the hotflashes and fatigue. I understand the winter texan thing, as my mom was one until her Huntington’s chorea got too bad and grounded her. I took care of her for a year after her diagnosis, when it became to difficult, she went into a nursing home. We went to the movement disorder clinic at Barnes hospital but not much they could do so she didn’t want to go anymore. I have this huntington’s gene and will go through loosing my ability to walk and talk. But on to brightside i know whats coming, but i can choose not to think about it. That must be God’s work because there is no other way to explain it! I will watch for your reply with Dr Anderson’s information. Have a wonderful day!
Becky

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Always great information!

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Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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Boomer, I read the same thing .. those of us with Bronchiectasis absolutely should be subscribing to: Receive our FREE Weekly Newsletter. I totally agree and sent the below email to Dr. Aksamit at Mayo Clinic .. if/when he answers I will share his answer .. because PART of the article says: The next step is to do longer-term studies to investigate whether an earlier intervention, with slightly less aggressive therapies, could help prevent disease progression in patients.” That MATTERS to me since I have now been diagnosed with three bacteria including Pseudomonas aeruginosa bacterium. Hugs! Katherine

Dr. Aksamit, Obviously I am very concerned about this new issue of Pseudomonas aeruginosa bacterium .. just battling with MAC .. now fighting Bronchiectasis! I read the below article re: Removing Antibodies from Bloodstream May Reduce Chronic Lung Infections in Bronchiectasis .. and wondered if Mayo Clinic is working on this? If it is a current option for me? Thanks for your help! Katherine Fink #

https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72040541

Liked by chinasmom

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@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

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It is…but issue is US doing such research, not UK speeding it up…we must get this info in front of our docs and ask them to push for such research here.

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@katemn

Good MAC Doctor?
Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago
I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It’s exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

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@chinasmom Becky, I am going to move your Post to the Main MAC page .. hoping you might get more answers there. Yikes it must be SO frustrating to have that kind of experience with your doctor! “an infectious disease student” .. is that at a teaching hospital? .. and no luck just googling doctors in the area? Hope someone jumps in with some help! Hugs! Katherine

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Dr. Adam Anderson M>D. Assistant Prof of Medicine, Division of Pulmonary and Critical Care Medicine at Washington University in St. Louis School of Medicine is my MAI Dr. His phone is 314 454 8763 and address is 4523 Clayton Ave. St. Louis, Mo. 63110. To schedule an appointment use 314 454 38917. His nurse is Anna Ellis at 314 273 1457. I was just diagnosed in Jan and been on the 3 meds since Jan 20th 2017. Also, Dr. Anderson ordered me a Smart Vest which I believe has helped a lot. Go back to him on April 28th to start all the routine testing MAI patients get. Will post what all he orders after I see him. If he doesn’t order vision/hearing etc I will be asking him for them. Know he’s doing kidney and liver as he told me that.

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@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I’m happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I’m very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he’s treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn’t started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn’t stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr’s office making the appointment. If you want his #, I can give it to you.

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BEcky33….all your drs sound good….did they also do a CAT scan?? what did it show if they did one? Two more questions:
1.do you cough less in texas where I assume it is dry?
2.do you have Gerd and Sleep Apnea? Terrid

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@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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MAC no cough. I am also at Mayo with Dr Aksamit, after being at NJ Denver. He is very kind and understanding. No frightning prognosis.

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@boomerexpert

Hey all…check this out…https://bronchiectasisnewstoday.com/2017/04/04/reducing-bonchiectasis-lung-infections-by-removing-antibodies-from-bloodstream/?utm_source=BRO+E-mail+List&utm_campaign=eee151230d-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-eee151230d-72041969 – far more research taking place in Europe than here…will also post in “we must advocate for ourselves” thread. This is the type of thing we must bring to the attention of our providers and ask why such state of the art research is not being conducted here…

Jump to this post

@boomer , thanks for looking out for all of us. There is great information in ” Bronchiectasis News Today”. Spent alot of time there yesterday because I am always looking for something i can give my family so they can try to have some understanding of what we are going through. They have a search engine where you can put in topics and it will bring up articles about your topic. They highlight words and topics that will link you to more information and they have a print option so, my printer was humming yesterday. They also suggest articles at the bottom of the page and I found one yesterday about a doctor describing chronic illness. I highly recommend it. That artcle has a link to that doctors blog with very lighthearted and funny stories. Everyone should check it out. Thanks for the link and for all you do.
Becky

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