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.

tdrell | @tdrell | Feb 17, 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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Jentayler....welcome to the group! Where do you live may I ask? Terri d

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jentaylor | @jentaylor | Feb 17, 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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State College, PA

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Katherine, Alumni Mentor | @katemn | Feb 17, 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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@jentaylor, is your name Jen? Welcome! So glad you found us! Don't worry a bit about "correctly" .. we are not very formal around here .. just try to help each other out the best we can. Jen, because of SOOO many stories I have heard over and over of people with complicated histories. My question .. are you being treated by an Infectious Disease doctor who treats other MAC patients .. so they are REALLY familiar with our disease? Because of your history I think you have to be very careful. Jen, when you say "I've been to great doctors & hospitals & yet no answers. " .. that worries me. Have you considered going to Mayo Clinic, Rochester Minnesota? They truly are "mecca" .. people from all over the world go there for answers. I hope this person does not mind me quoting her but this is just a part of what she wrote and I just read:
"What my home doctors couldn't figure out for 12 years, Mayo Clinic figured out in only six months.

I want to write a book about what happened to me... due to my symptoms of P450 drug metabolisms issues, which doctors around the country are widely-unaware of, I was misdiagnosed with a rare endocrine condition, had brain surgery that I later learned I never needed (which resulted in a brain injury), etc. My home doctors were prescribing me tons of medication of that I don't properly-metabolize, making me sicker and sicker as time went on.

Jen, I am NOT saying this is your situation .. but your situation sounds very complicated and when I read your sentence " "I've been to great doctors & hospitals & yet no answers. " I immediately thought of that other woman who had been through so much before she went to Mayo Clinic. Just give it some thought .. a second opinion?

Jen, until then .. read through the past pages of our Forum .. there is a lot of knowledge about our shared MAC disease to be found there .. how to get started on the meds .. how to schedule them .. what questions you should be asking you doctors .. all kinds of things. As you read please feel free to ask questions .. we will try to answer them best we can. We are all here to try to help you .. we've all been where you are .. we know how it feels. Keep coming back .. we are here. Sending you a hug! Katherine

REPLY
jentaylor | @jentaylor | Feb 17, 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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Hi Katherin, I wrote a very long reply than my phone battery died & I lost all that I wrote!!! I will try it again tomorrow when I'm not so tired & frustrated! Thanks for your post...I'm very eager to reply & see what you think & look at what's out there to read more about all aspects of living with MAC. Talk tomorrow...night, night! ~Jen

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

<br><br><br><br><br>Welcome to the forum Jen! You came to the right place. Nobody understands <br>what we go through better than this group right here. I too had this <br>condition at your age. Mine was not properly diagnosed for many years. The <br>upside is, you are getting treatment now as to prevent further damage with time. <br>We are here for you. Hugs - Terri M.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

<br><br><br><br><br>Hang in there Jen! We are here for you!<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

<br><br><br><br><br>Jen, Katherine is right. Get yourself to a gold standard practitioner. I <br>went to 'the best doctors' in several cities I have lived in over the years. I <br>went 20 years without being properly diagnosed or treatment. My lungs have paid <br>the price. They are so deteriorated now, that I may be looking at a double lung <br>transplant in the next year or two. I got pre-qualified for a transplant just <br>this past Dec. I am on the deferred list for now because I am not ill <br>enough yet, but they are forecasting that it is coming. -Terri M.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 18, 2017
In reply to @katemn "@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful..." + (show)
@katemn

@imeehaigt, Oh Imee! I am SO happy for you! What a wonderful day .. what wonderful news! Just continue to do your "due diligence" .. now that you have educated yourself .. you now know how to take good care of your body .. so IT can take good care of YOU! YEAH! Just continue to do what you know you should be doing .. DON'T let up! I am SO happy for you! The New Year will be a GOOD year for you! Sending you a hug! Katherine

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<br><br><br><br><br>I am dying to know too!<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 18, 2017
In reply to @lindam272 "Marie - I just joined this forum also and live in Arizona so can't help from..." + (show)
@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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<br><br><br><br><br>Hooray Linda!<br> <br><br>

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pamelasc | @pamelasc1 | 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.
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@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

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A few days ago there was a notice about a Mayo Clinic conference in May in D.C. about bronchiectasis and MAC - but now I can not find it. Does anyone have a link for this so I can get the details? Thank you, Pamela

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