(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

@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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@128128terry11t, you’re right Terry, we ARE right here .. every step of the way .. each of us in our own way .. each of us on our own but shared journey! Hugs to you! Katherine

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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I really appreciate this group and have learned a lot about my MAC. I also have Bronchiectasis. Is there a chat group for people with that?
Hugs from David

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@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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Not sure about dividing up drug. I take 4 ethambutol at a time and asked both doctor and pharmacist if I could divide it. Both checked the literature and found no permission to do this. They said it needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine.
David

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@david1952, David, our group is ALSO labeled “Bronchiectasis” .. AND since I have been stable from the MAC since May 2014 .. I really feel I am now primarily dealing with the affects of my Bronchiectasis .. so REALLY wish more of our group with Bronchiectasis would jump in and share symptoms .. tips .. survival techniques .. what their doctors have told them etc! I would LOVE this!

My Dr. Aksamit told me that MAC and Bronchiectasis frequently go hand in hand .. that it is really not know which comes first .. chicken/egg thing. Do we get Bronchiectasis first .. then it becomes a breeding ground for the mycobacterium .. OR do we get MAC and the Bronchiectasis comes second. They just don’t know.

I have been told that my Bronchiectasis is not severe yet so I am very grateful .. BUT it is a real pain in the batooty! I cough a LOT .. especially for some reason in enclosed spaces like cabs/autos/buses .. theatres .. restaurant booths. The result is CONSTANTLY kind people offering me lozenges if I have forgotten to tell them “I have a lung condition .. but it is NOT contagious” .. my usual refrain It really becomes terribly embarrassing because it is constant! I also cough a lot when I lie down to go to sleep at night. But I keep reminding myself of my “gratitudes” .. how it could be SO much worse!

So David, hope others with Bronchiectasis jump in with their thoughts etc. I’d really like that! I’d love more activity about Bronchiectasis. Hugs! Katherie

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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Hi Terry
Rifampin messed w my sleep. I take it in AM 1 hr before breakfast now. You gevused to it in 3-4 weeks, at least I did. Also, it keeps Synthroid from absorbing so I got very hypo thyroid.

Also, I got irregular heartbeats and was VERY shaky and nervous at first. I think Azithromycin plus just being nervous when you first find out you have MAC all contribute.

Try to give it time, eat healthy, get a little exercise, stay busy with other things……it gets better, promise. I cried the first week on meds. I’m pretty ok now….

KayS

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@lindam272

Marie – I just joined this forum also and live in Arizona so can’t help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I “favorited” the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

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@david1952, David, thank you SO much for jumping in .. this is a GREAT piece of information for our Forum! In fact I am going to add it to my notes! Good job! Hugs to you! Katherine

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@kaystrand, Good advice Kay .. you all know just how tough it is in the beginning .. but at least Terry found our community of great people .. she definitely no longer has to feel so alone! Hugs to you! Katherine

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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Terry, I am 2 days of 7 into my workup at National Jewish Health. I will always be grateful I came!! The place is amazing! Every one who works there are caring…..I am treated as a person. The testing …example CAT scans are the most thorough I have had! And the results…which you can access thru the patient portal online site…are so thorough and detailed I wish all radiologists could come and learn how to be so exacting.
I stayed at Residence Inn downtown who has a free shuttle to Denver Jewish and reasonable special rates for clinic patients.I will stay at a Staybridge Suites next week….again…special rates and free shuttle.
Be sure to bring along CDs of tests even if you had them mailed
A thick folder will be sent with info….be sure to filll out and send in what is needed….and bring the folder and empty notebook with
More after January 16. Terri d

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@128128terry11t

Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia for last 3 nights. Is this common? What can help. I am due to go to National Jewish in Denver but started treatment as everyone seems to be sick around me and had two consecutive pneumonias and felt very unprotected. Spoke with someone at National Jewish and she said I could start and that they may have to tweak. I think now that this is a distinct possibility. New to this forum and thank you so much for this needed support. I am truly grateful.

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@tdrell, Terri, thanks for all the good advice .. as your usual! Keep us posted on how you do on our own Forum so our people will know how you are doing!
Terry is now posting there! https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20
Hugs! Katherine

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Terry
Hope someone can send you the link from Dr Huitt at NJ on how to take meds. She says to take all Ethambutol at the same time to get it into your system each day. Same with Rifampin. I take R in am and E and Z in evening. All on empty stomach for absorption!
Others can weigh in on this.
KayS

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I would be interested in that link as well. The woman in my office who has the same disease takes her meds separately because they are so hard on the system so that’s what I’ve been doing. I seem to tolerate the Ethambutol well so will take those together tomorrow and will do the same with the Rifampin, taking them as you do. The Ethambutol is supposed to be taken with a snack or light meal according to the literature that comes with the rx.

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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Katherine, hi. It’s Mary Jo. Just read your note about the bronchiectasis and desire for more information on this forum. As I have told you before, I have that disease and iit was caused by a mycobacterium. It was diagnosed in 2009. It is a progressive disease, no cure, just maintenance. Your constant work is to not get a cold, bronchitis, pneumonia , you get the drift. Each lung infection makes your widened airways worse, especially the severe coughing associated with these illnesses. Each person I know with the disease does different scheduled things- ABX, nebulizers, airway cleaners, vitamins, the Vest. I can only say what I do personally. I started with arithromycin for awhile, bactrim when I had green mucus coughed up or some bleeding when coughing(infection). That worked for quite awhile keeping me from getting really sick. Right now I take doxycycline for 14 days, 2 weeks off, then Keflex for 14 days, then 2 weeks off, then repeat. If I feel infection starting I take levoquin for 10 days. I have tried saline in the nebulizer, but it was not for me. Many others do use the nebulizer daily. I tried a number of inhalers, again, no effect on me. I take NAC daily and try to walk a lot. Every day I lie down, get out my Aerobika, and clear my lungs, usually for about 45 minutes. I use a lot of Kleenex! I do cough a lot, as you said. Very embarrassing! The time to clear is not always predictable for me. I just feel my lungs tightening, and I cough, and it is pretty yucky. I do get more fatigued than I used to, so I try to pay attention to that, and sleep a little more. Hope this is a bit of help if you have been diagnosed with bronchiectasis.

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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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@david1952, David and @maryjo2sell, Maryjo, thanks so much for jumping in! MAN! what a LOT of good advice for @david1952, David! I think I am going to start a new Bronchiectasis note page .. keep track of different tips our Group posts. I have reams of data I collected when I was diagnosed if people have an actual question that I can then refer to .. BUT I think the BEST is the kind of advise/help/every day dealing with the disease that our members like you post and use in real life! Thanks again .. just can’t beat our great group of people! Hugs to you! Katherine

Liked by user_chcb337b5

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Linda, another member just posted this good information .. thought I’d share it. But would also appreciate that link from anyone who has it! Hugs! Katherine

Taking 4 antibiotic pills prescribed (such as Ethambutol) at a time. Per both doctor and pharmacist re dividing dosage .. both checked the literature and found no permission to do this. They said a drug needs to hit the bloodstream at full strength. A weak dose may not knock out the bacteria and let it morph into a different bacteria that resists the medicine.

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Hmmm…I’ll have to check with my doctor. The Ethambutol rx was written 1 pill 3 times a day. So do you hit it all at once like your research shows or keep it in your system though out the day? I will call on Monday and see what he says. I checked the bottle for my Rifampin and it does say 2 pills once a day so I took both first thing this morning with my probiotics. Thanks for your input Katherine! I’ll let you know what I find out. Linda

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