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.

chinasmom | @chinasmom | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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Kathrine , Go be there for your husband and don't forget to take care of yourself too. This group will care for each other so don't worry. You are loved and appreciated for all you do!
Becky

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patw | @patw | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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We will all wait for your return. Hope everything goes well for you and your husband.

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tdrell | @tdrell | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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Oh Katherine hope your husband with his CLL will be ok ...in the meantime...DO NOT LET your recent fragile sitiuation get out of control....be good to yourself as you act as your husband's advocate!!! terrid

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boomerexpert | @boomerexpert | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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Here's to hubby's healing quickly and will do

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heathert | @heathert | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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no worries, please take care Katherine, hope all goes well with your husband.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 24, 2017
In reply to @katemn "Dear All, Please be there for each other .. jump in and help .. especially watch..." + (show)
@katemn

Dear All, Please be there for each other .. jump in and help .. especially watch for newcomers. It is nearly 2am .. I just got home from the hospital .. took my husband early today .. been there all day and night. Think I can bring him home within 2-3 days .. but I will not be able to be on our Forum till I get him home .. I will be at the hospital. Please be my ears and eyes .. I know you will .. sending you all a hug. Katherine

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<br><br><br><br><br>Hi Katherine, let us be the furthest things from your mind. Know that we <br>care and send up prayers and hopes for a good outcome for your hubby. Hanging <br>out in hospitals is tough. Be sure to take care of yourself too. We all send <br>love and hugs, sincerely, Terri M. and the group.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 24, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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<br><br><br><br><br>Hello, I have read that MAC can affect the stomach. Mine, I don't think <br>has. I never have cramps or anything, but, I have wondered if my intestines are <br>not absorbing nutrients properly as I have lost a lot of weight. (22 lbs) <br>recently gained 8 lbs back. Hopefully some others can jump in on this. I am <br>there with you on just trying to get through every day tasks. For some reason, <br>it takes longer to do things. Hang in there. Hugs! - Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 24, 2017
In reply to @katemn "@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your..." + (show)
@katemn

@gggolfs, GG, just exercise, eat healthy, stay positive, keep up your doctor appointments .. be your own best advocate .. THEN do NOT believe/think about 'horror stories' .. I was on 4-5 antibiotics for 30 months and I CERTAINLY did not feel I ever went through any horror stories! Yes I had some fatigue, loss of appetite , sleep disturbance etc .. but really no biggie .. your body DOES adjust after a time .. it really is NOT a big deal. DON'T make a bigger deal of it than it is! Better to get RID of those nasty critters as I call the mycobacterium than allow them to multiply! So just continue to be happy .. the IF/WHEN the day comes you need to take action .. we are here .. we have ALL been on that journey! We will walk that journey with you! Hugs to you! Katherine

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<br><br><br><br><br>Good to know.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 24, 2017
In reply to @barbjh "It has been some time since I have written on this forum but read most responses..." + (show)
@barbjh

It has been some time since I have written on this forum but read most responses every day. Tomorrow I go back to the Mayo for a follow up visit. Dr Aksamit has decided not to treat my MAC in the past but to just watch it. I will be doing tests tomorrow and then seeing someone in pulmonary who works under Dr Aksamit. I am a little nervous about this visit. Wish I was feeling better but that is not the case. But I have gained weight which was a concern after losing 10 pounds before. Another thing is I usually go alone so it can be overwhelming. At least I live close by, 1 1/2 hours away. I will let you know how it goes, just wanted to reach out to all of you wonderful people that can relate to the struggle. Barb

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<br><br><br><br><br>Hi Barb, you will be in good hands at the Mayo. Keep us updated. Terri <br>M.<br> <br><br>

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Paula_MAC-2007 | @Paula_MAC2007 | Mar 24, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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Hello @ijustdontbreathewell -- do you have a good primary care doc -- internist or family medicine doc? Any good doctor would be concerned about someone gaining 32 pounds in 2 months, and would check for things other than 'retaining fluids'. A thorough exam & work-up would be in order ASAP, not by a pulmonologist or infectious disease doc. NTM or MAC doesn't present these type of symptoms. Something is causing you to swell up, retain fluids, etc. and that could be many things. I have had several friends & acquaintances who suspiciously have unexpectedly gained weight, thinking fluid retention, and it was tumors growing undetected. I hope to read soon that you've seen an excellent internist who is following thru on your situation. My very best to you. Please report back to us.

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