(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

Please all thank @Paula_MAC2007 for her GREAT idea .. NOW posted at the beginning of each new page! I did not know how to do it .. add it .. but the “higher ups” did upon my request . . and we are now good to go!

Frankly when I wrote that very first post in 2011 .. I had no way of knowing what a fantastic . . wonderfully supportive community our group would become! Wish I had thought of this idea to share sooner .. it will be SO helpful for new people .. and for EACH of us going forward! Thank you Paula! Hugs! Katherine
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
KateMN

REPLY
@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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Nebulized antibiotics… they do exist so why the lack of ability to do this w/MAC meds?! Also he doesn’t mention another source for its onset- RA – which is my cause…

REPLY
@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

Jump to this post

I’m right there with you.  I am 72 years young (sort of) and grateful for everything.  Trying to be like the energizer bunny — sometimes I make it, sometimes I don’t.  Having a tough time with severe nervousness, tachycardia, severe insomnia, and high blood pressure. My local ID Dr says that she never heard of these symptoms!!!  My local primary said to go off all antibiotic meds and go back one by one to see which is the culprit as the local ID put me on all 3 at once.  He even suggested that it all could be from nerves.  A real throw back to the 1950s when all was blamed on nerves.  Don’t you just love it!  Can you imagine that horrific advice from both!!  Will be changing doctors for certain.  This support group has toughened me up.  I settled for kindness and now I won’t settle until I find competence.  Scary that almost all of us know more than the physicians who treat patients like us.  Scary and frightening! I am looking forward to the road being a less less bumpy. 

REPLY
@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

Jump to this post

@laneyk, Elaine, what a GREAT response!! Thank you for taking the time to write it! You are SO absolutely correct. If any new person reads the pages of our Forum .. they will have done their “due diligence” . will truly have educated themselves on their MAC disease .. AND then I feel will be FULLY capable of advocating for themselves in their health care. That INCLUDES being able to judge whether their current Pulmonologist is knowledgeable enough to properly treat them .. THEN if they feel they do not .. smart enough .. knowledgeable enough to seek out a 2nd opinion .. UNTIL you DO find a good MAC doctor.

As you said .. this does NOT require the expense of travel to a major MAC center .. JUST educating yourself to the point that you can properly judge the care you are going/are getting. A LOT of that education you can find right here luckily. Wish it had been available to me when I was first diagnosed in 2007 .. would have saved me a lot of heart ache. So Again, Elaine .. really good post .. it will help people be reassured in their decision to seek local GOOD MAC doctor if available! Good job! Hugs to you! Katherine

REPLY
@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

Jump to this post

@128128terry11t, Terry, I just LOVE your ” This support group has toughened me up.  I settled for kindness and now I won’t settle until I find competence.’ You go girl!

Terry, truthfully what delights me even more is the change from ‘Desperate for help” .. to this new tough cookie!! I just love it!! This group can feel SO proud of itself to know that we can help a newly diagnosed MAC traveler on our shared journey in this manner! That we ALL remember how scary it was in the beginning .. AND continue to reach out to new people because of this. And Terry, I have every confidence that as you are able in the future .. you TOO will ‘play it forward’ .. help others as you have been helped. This is what our community is all about! I am so proud of you! Hugs! Katherine

REPLY
@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

Jump to this post

Boomer, no ONE video can have all the answers .. just one more piece of the puzzle to help us along on our journey … perhaps a nugget of information that someone on our Forum was unaware of. . that may help them Katherine

REPLY
@katemn

128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!

HELP! Does anyone use a Mac computer? I use a Windows 10. So on my screen when I get an email .. at the bottom it says “View and Reply”. When I hit that it takes me to your post. I read your post. Below your post it says “Reply”. If I hit that .. it then takes me to a space where I can answer you.

OR below “Reply” it has two symbols:
1. a “heart” which if I hit .. you will receive an email that I “liked” your post.
2. a “flag” .. frankly I don’t have a clue what that is for! Never used it .. sorry!

QUESTION: On a Mac computer .. do you see a ..1. a “heart” which if I hit .. you will receive an email that I “liked” your post. per the above??

Not being familiar with the Mac computer I am at a loss for an answer .. please jump in if you know an answer to the question if the “heart” appears like in Windows .. OR if in a different manner! Thanks to all! Katherine

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@laneyk Elaine, thanks for the info! The person with the MacBook found the heart .. thanks!

You are right on about that med .. my notes say:
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. Hugs to you! Katherine

REPLY
@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

Jump to this post

Totally agree with you boomerexpert on using nebulized medications for Mac. Since the infection is in your lungs makes sense to treat it more locally instead of antibiotics through the whole body.
Interesting I also have RA ….Will check with my pulmonologist when I see him on the connection.
I have had two sputum cultures positive for Mac abcsesses but not on any medications yet still waiting for the third sputum.

REPLY
@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

Jump to this post

Hi @del,
If your diagnosis MAC or bronchiectasis related, then simply click REPLY and post your message for community members to comment on. If your diagnosis is not Lung Health related, then please choose a group from this list https://connect.mayoclinic.org/groups/ and start a discussion.

To get more tips on how to use Connect, see this link https://connect.mayoclinic.org/get-started-on-connect/

REPLY
@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

Jump to this post

Check w/both pulmo and rheumo

REPLY
@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

Jump to this post

Absolutely. Mine is a pulmo who specializes in MAC so I don’t need ID…but must be a doc who specializes in the disease…it’s far too serious to be handled by just any doc who knows not what s/he is doing… Unfortunately, as we see here, too many are in over their heads yet won’t admit it…

REPLY
@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

Jump to this post

I agree completely! We need to get the MAC word out so more is known about it.

REPLY
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