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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2017
In reply to @katemn "@jentaylor Hi Jen, I think this is just so great! You will come back to our..." + (show)
@katemn

@jentaylor Hi Jen, I think this is just so great! You will come back to our Forum with all kinds of notes and information to share! Can't wait to hear all about it .. but I will be a proud Grammy watching my final little one walk across that stage getting her college diploma! Both wonderful events! Keep good notes to share! Hugs! Katherine

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<br><br><br><br><br>I will tell him if I can get near him. I used to go to the Alpha-1 <br>conferences and other lung conferences in the past and was able to speak to some <br>of the guest speakers at the end of the program. So, maybe...<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2017
In reply to @katemn "@jentaylor Hi Jen, I think this is just so great! You will come back to our..." + (show)
@katemn

@jentaylor Hi Jen, I think this is just so great! You will come back to our Forum with all kinds of notes and information to share! Can't wait to hear all about it .. but I will be a proud Grammy watching my final little one walk across that stage getting her college diploma! Both wonderful events! Keep good notes to share! Hugs! Katherine

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<br><br><br><br><br>Terri, there is a phone number on that conference site. You can call or <br>e-mail and ask them if it will be video recorded.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 21, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@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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<br><br><br><br><br>Hi David! Congrats on the weight gain. I know how special that is to <br>regain some fighting weight. I too have gained and held on to 3 lbs. I am taking <br>this as a good sign. <br> <br><br>

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jentaylor | @jentaylor | Feb 21, 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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Hi, I booked a room at the Bird House Bed & Breakfast. I don't know how close it is to the conference but it is in the same Northwest section of D.C. It looks quaint! I hope it turns out well! It has excellent ratings! ~Jen

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jentaylor | @jentaylor | Feb 21, 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 Terri, Thanks so much for your reply! I'm thrilled to hear that Medicare pays 80%!!! That's excellent news! ~Jen

REPLY
colapyrus | @colapyrus | Feb 21, 2017

For those of you who were evaluated at National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample?

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2 replies
terryb1 | @128128terry11t | Feb 21, 2017
In reply to @colapyrus "For those of you who were evaluated at National Jewish: how long (approximately) does it take..." + (show)
@colapyrus

For those of you who were evaluated at National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample?

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I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me.  If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner.  Hope that this is helpful.  Don't be afraid to call them and ask that question; they are extremely kind and professional.  You will have an excellent experience.

REPLY
decosmo | @decosmo | Feb 21, 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

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Looking for some guidance on probiotics. I am taking a daily probiotic at night and am finding I get gas. I can't take probiotics that are milk based because I have a lactose intolerance. Has anyone found a good dairy free probiotic? Last week I woke up with a sharp pain in my left lung every time I took a breath. Still there although not as painful as three days ago. I have been coughing green stuff, so I am afraid my NTM might be active again. My local pulmonary dr. took an X-ray and she said it looked like I had inflammation but wanted to rule out a blood clot. Take the test for the third time now since I started this broncho and NTM journey. Thankfully, no clot. Seeing Dr. Leventhal on Thursday and have another PFT and forced induced sputum test at the Mayo in Jacksonville. I think I see antibiotics in my future and I need to find a good probiotic. I am finally getting the SIBO under control and don't want to start on this vicious cycle again. Rosie

REPLY
Katherine, Alumni Mentor | @katemn | Feb 21, 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

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@melrosedecosmo .. Rosie, I just googled: lactose free probiotics and came up with .. Dairy-Free Mega Probiotics, Vegetarian Complex Suitable for all Ages, Normal Digestion, Irritable Bowel or Constipation. It has 15 billion .. and 8 strains .. read the reviews and see what you think .. I hope others will jump in who have actually tried a lactose free one! Personally I always take my probiotic in the morning on an empty stomach per the instructions .. have not had a problem with gas .. bet it is your lactose?
https://www.amazon.com/dp/B00CCZ9FU2
If you are coughing up GREEN stuff .. GLAD you are going to Mayo to Dr. Leventhal .. THE place you should be going .. YEAH!! Please keep us posted what happens .. you know we will be here every step of the way! Keep telling yourself that mantra .. to "Put my energy into what I can control .. and let go of what I can't control". ie .. you can control getting that Mayo appt .. doing what you are told at that appt .. but letting go of the outcome. Know we are here! Sending you a Hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Feb 22, 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

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Rosie, just found another one .. one I use! It says on the label no dairy .. but check it out: Healthy Origins
Probiotic 30 Billion CFU's .. I didn't buy it here but one website that popped up was:
http://www.puritan.com/digestive-health-047/ppprobiotic-30b-cfu-s30bill-025300?scid=37932&cmp=goo-_-DSAAllPages&gclid=CMfm1JuEo9ICFZU1aQodpRAKhA&mvc=1
Katherine

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