(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

Jump to this post

@tessie, Hi Tessie, would you mind giving us a link to the particular probiotic your doctor prescribed? Under products there are quite a few .. did one particular one work well for you? Hugs! Katherine
http://www.biokplus.com/en_us/about-probiotics#why-bio-k

REPLY
@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

Jump to this post

$190 plus tax, it came to $215 

REPLY
@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

Jump to this post

You will find several shown under products, i.e., 12.5. The pharmacist placed an order for me. Tessie

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 Terri, I’m sorrry to hear about the severity of everything. That must be rough to handle & manage. I was on oxygen 24/7 for 3 years & miraculously I was able to wean off. We have no medically based answer for it. Regardless, I still have plenty on my plate but that has been one huge blessing over the years. Most people don’t realize the severity of illnesses or understand what it might be like. It makes it really hard. Although, when I was wearing oxygen 24/7, (I still do at night) everybody would stare & it was apparent that something was wrong & I hated that! People probably still stare when I’m doing poorly or on oxygen for short periods. So I don’t know if it’s worse to have people know & maybe try to be understanding or at least considerate, or if everything looks normal on the outside so nobody knows…?!? I guess both ways just awful. I just wanted to respond & let you know that I’m & sending you good energy! ~Jen

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

Thank you Jen.

REPLY
@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

Jump to this post

Rosie – this is Pamela – my probiotic is dairy free – it is made by Jarrow and called Ultra Jarrow Dophilus – 50 billion per capsule. I take it mid day with applesauce just after lunch as I take my meds for MAC after dinner so I try to keep them separate. As to your cough, early on when I first began the meds for MAC my cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. Pamela

REPLY
@katemn

Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago
I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.
++++++++++++++++++++++++++++++++++++++++++++++++++++++
@21042 .. Kathi I think you can already tell I am a pretty straight shooter .. I tell it like it is .. so here goes. Your doctor is NUTS .. AND poorly informed!! You can tell her that Dr. Timothy Aksamit at Mayo Clinic, Rochester MN .. a worldwide respected EXPERT on MAC told ME to start on probiotics the FIRST time he started me on antibiotics! Plus if you read through the pages of our Forum you will read how much probiotics are helping our other members. Kathi, do what feels right for you and your body .. BUT I just wonder how many MAC patients your Pulmonologists has treated in the past 12 months?? Sorry, but she just doesn’t seem up to speed enough to help you to your best self.

Please re read the above message from Posted by @pamelasc1, 3 days ago .. might that help you? I feel so bad for you .. BUT do NOT give up .. it is so tough in the beginning but it DOES get better .. just put one foot in front in front of the other. We will all be here for you. I am answering you an the Main MAC Forum .. I want you to get more support from more of our wonderful members! I am sending you a BIG Hug! Katherine

Jump to this post

Kirkman brand is allergy free and a safe facility.

REPLY

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

Thank you Katherine – by the way, can you send me any links that have info on the harmonica therapy – I can not find your original email and want to learn more. Pamela

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

WHAT??!! Bronchs are done under general anesthesia…any doc who does anything else is not a good one. I’m about to have my second…worse thing i experienced was feeling drowsy the rest of the day until the anesthesia was out of my system.

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

@pamelasc1, Pamela and Boomer, for me personally I threw up 24 to 48 hours after general anesthesia .. so in speaking to a wonderful anesthesiologist he spent time explaining to me that with “twilight sleep” there is a spectrum .. say 1 to 10. Ten being taking me as deep as general anesthesia. That with a careful anesthesiologist I could be taken as deeply as necessary with “twilight sleep” without the horrific vomiting. After speaking with him I have NEVER had general anesthesia again! I now have on my medical record when going into a hospital/same day surgery the statement: I have a compromised respiratory system with MAI and Cylindrical Bronchiectasis being treated by Mayo Clinic. * *WORKS FOR ME: *Anesthetic: Conscious Sedation: Diprovan and Zofran worked VERY effectively. Also works: Anzimet/Versed

Now, this is just me .. but wanted to let you know there are options that YOU as a patient can fight for. As we get older there are ALWAYS potential side effects to general anesthesia .. I just refuse to take any more chances than necessary! Hugs to All! Katherine

REPLY
@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

Jump to this post

Yes, Katherine, there are definitely anesthesia options. I am very sensitive to anesthesia and am treated with kid gloves whenever I have to go to sleep for a procedure. We are our best advocates on that one too – given the fact our lungs are already compromised, and especially if it isn’t written in our chart about anesthesia difficulty. Irene

REPLY
Please sign in or register to post a reply.