1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Katherine, Alumni Mentor | @katemn | Feb 18, 2017
In reply to @jentaylor "Hi all, this is the very first time I've ever joined an online discussion group &..." + (show)
@jentaylor

Hi all, this is the very first time I've ever joined an online discussion group & I have no idea if I'm doing it correctly! I'll give it a try though. I'm 42 & have had a rare, undiagnosed lung disease since 2007. I've been to great doctors & hospitals & yet no answers. I also have immunodeficiency & get IVIG every 2 weeks. Then to add to all of this, a bonchcoscopy/washings came back positive for MAC (& Aspergillis but probably in my nose). And the most recent Lung CT scan showed the bronchiectasis. So for the past 6 months we have been trying to decide on whether to start treatment because I'm already on 28 daily meds (with a total of 46 including my PRN's). I'm not an easy case & we really wanted to weigh all measures before proceeding with treatment due to the high risk for side effects. We had our appointment yesterday & decided to start today! I'm very nervous! I was online looking for info that I hadn't yet come upon & found this chat/discussion/forum. I'm hoping to find some information but also some support. I feel so alone with this right now, so reading your entries is somehow comforting knowing I'm not the only one. It's another big bump along my health journey & lung dysfunction. Very frustrating & scary to me. I'm overwhelmed. I feel like others don't understand but at least here, I know that you can relate. So thank you for being there!

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@windwalker, Terri, thank you for jumping in .. I hate that this is true for you .. BUT nothing speaks better for new people than the truth of what people like you have gone through with poor diagnosis and medical care .. doctors who possibly were too arrogant to admit they didn't know enough so didn't refer on to someone who DID know! Doctors do not have the right to play god with our bodies .. that is why only WE must do our OWN "due diligence" .. educate OURSELVES .. and push on until we get the right answers. Thanks again Terri. Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Feb 18, 2017
In reply to @milindohope83 "Yes, probiotics really help with the healing process and to prevent breakdown of the immune system..." + (show)
@milindohope83

Yes, probiotics really help with the healing process and to prevent breakdown of the immune system in general.

Jump to this post

@milindohope83, do you have a first name? Yes I totally agree .. in fact two of the highest regarded sources, Dr. Timothy Aksamit of Mayo Clinic recommended I take probiotics when I started antibiotic treatment .. plus this : @tdrell, Terri Dr Gwen Huitt ID MD specializing in NTM at National Jewish Health urges clients on the antibiotics to take probiotics...She earned a masters in Microbiology prior to attending Med school. And has worked with hundreds of NTM clients. As far as I am concerned .. these two sources are the Gold Standard not to be disputed in my opinion .. but each of us must make our own decisions for our own bodies as each of our bodies are different. Hugs to all! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Feb 18, 2017
In reply to @jentaylor "Hi all, this is the very first time I've ever joined an online discussion group &..." + (show)
@jentaylor

Hi all, this is the very first time I've ever joined an online discussion group & I have no idea if I'm doing it correctly! I'll give it a try though. I'm 42 & have had a rare, undiagnosed lung disease since 2007. I've been to great doctors & hospitals & yet no answers. I also have immunodeficiency & get IVIG every 2 weeks. Then to add to all of this, a bonchcoscopy/washings came back positive for MAC (& Aspergillis but probably in my nose). And the most recent Lung CT scan showed the bronchiectasis. So for the past 6 months we have been trying to decide on whether to start treatment because I'm already on 28 daily meds (with a total of 46 including my PRN's). I'm not an easy case & we really wanted to weigh all measures before proceeding with treatment due to the high risk for side effects. We had our appointment yesterday & decided to start today! I'm very nervous! I was online looking for info that I hadn't yet come upon & found this chat/discussion/forum. I'm hoping to find some information but also some support. I feel so alone with this right now, so reading your entries is somehow comforting knowing I'm not the only one. It's another big bump along my health journey & lung dysfunction. Very frustrating & scary to me. I'm overwhelmed. I feel like others don't understand but at least here, I know that you can relate. So thank you for being there!

Jump to this post

@jentaylor, Jen, rest and take care of yourself .. we will be here when you are ready! Sending you a hug! Katherine

REPLY
21042 | @21042 | Feb 18, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

This is 21042 Kathi. Pamala ive taken the same schdule as you suggested to me. Took all three meds at 9:00 pm. Slept 5 hours, went for a bathroom break, slept another 4 hours. Felt pretty well this morning and actually ate a decent breakfast. Nothing has sounded good to me and mostly nauseates me. But this morning when i got up half an English muffin with peanut butter and a little bit of jelly on top, and fresh orange. Its the first food that tasted good to me and didnt make me nauseated. I lik your schedule because you actually have two full days between meds and on the weekend you have three. I may feel like going to church tomorrow. Thank you for helping me.

REPLY
21042 | @21042 | Feb 18, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

Thank you so much. I really was ready to give up. I was soooo sick. Pamala has helped me with a schedule thats working for me. Thank you Pamala.

REPLY
Katherine, Alumni Mentor | @katemn | Feb 18, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

@21042, Kathi and @pamelasc1 .. Pamela .. I am just jumping for joy!! This is just wonderful! Pamela you are a star for coming up with this schedule! I am going to recommend it from now on for people getting started!! Kathi I am so happy for you .. keep us posted!
Hugs to all! Katherine

REPLY
21042 | @21042 | Feb 18, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

Thank you Katherine. I like to have a friend be a "straight-shooter". I will definately get on the probiotics. Anything that will improve my health, i want to do. Im doing better today after my meds. Now i need to gain some strength by eating. With the nausea, i've had no appetite, but today im actually hungry and i want only good food in my body.

REPLY
Katherine, Alumni Mentor | @katemn | Feb 18, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

@21042, Kathi, I'm so glad! Just put one foot in front of the other .. each day will get better .. we promise .. we have all been there. You are only given one body in this lifetime .. take good care of it .. feed it good food .. care for it .. so it can take care of you for the rest of your lifetime! It gets better .. we are all here for you! Sending you a hug! Katherine

REPLY
boomerexpert | @boomerexpert | Feb 18, 2017
In reply to @jentaylor "Hi all, this is the very first time I've ever joined an online discussion group &..." + (show)
@jentaylor

Hi all, this is the very first time I've ever joined an online discussion group & I have no idea if I'm doing it correctly! I'll give it a try though. I'm 42 & have had a rare, undiagnosed lung disease since 2007. I've been to great doctors & hospitals & yet no answers. I also have immunodeficiency & get IVIG every 2 weeks. Then to add to all of this, a bonchcoscopy/washings came back positive for MAC (& Aspergillis but probably in my nose). And the most recent Lung CT scan showed the bronchiectasis. So for the past 6 months we have been trying to decide on whether to start treatment because I'm already on 28 daily meds (with a total of 46 including my PRN's). I'm not an easy case & we really wanted to weigh all measures before proceeding with treatment due to the high risk for side effects. We had our appointment yesterday & decided to start today! I'm very nervous! I was online looking for info that I hadn't yet come upon & found this chat/discussion/forum. I'm hoping to find some information but also some support. I feel so alone with this right now, so reading your entries is somehow comforting knowing I'm not the only one. It's another big bump along my health journey & lung dysfunction. Very frustrating & scary to me. I'm overwhelmed. I feel like others don't understand but at least here, I know that you can relate. So thank you for being there!

Jump to this post

Yours is indeed a very complex case, particularly with the number of meds you're taking (wow!). Sounds like your docs are taking all into consideration and moving with care. I find that refreshing, as too many docs jump in without considering all factors that could, if not handled correctly, create further complications rather than addressing existing ones. If you'd feel better, a second opinion from a doc at National Jewish or Mayo would do the trick.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 19, 2017
In reply to @katemn "Joined: Feb 13, 2017 Posted by @21042, 13 minutes ago I talked to my pulmonologist on..." + (show)
@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

<br><br><br><br><br>Hi Pam, Per your request for info on that conference in D.C. You will have <br>to Google this as I do not know how to bring in an outside e-mail to this group. <br>Here is what you need to search: NTM & Bronchiecstasis Physician/Patient <br>Conference  this will also include the registration form. The event is on <br>May 19 at the Georgetown University. I am thinking of going as well. Wouldn't be <br>great if a whole bunch of us from this forum went and got to meet each other? <br>Terri M.<br> <br><br>

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