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.

ijustdontbreathewell | @ijustdontbreathewell | Apr 1, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

<br><br><br><br><br><br><br><br>Thanks so I want to make sure I understand, if the auto-immune disease was not diagnosed prior to the MAC diagnosis so I was not taking corticosteroids to suppress<br> the immune system, with the exception of 5 days when I have a sinus infection, 2-4 times a year, then it would not be related. It would actually be the treatment with immunosuppressant drugs that help the MAC take host. It would not be that people who are<br> pro to auto-immune disease or have one or more are more likely to have MAC if said disease is not being treated with immunosuppressant therapy.Am I understanding correctly? Sorry my headache is splitting so I am dense today, but it is better than this morning.<br> I appreciate your help.<br> <br><br><br>

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Apr 1, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

<br><br><br><br><br><br><br><br>Thanks for responding Irene, I am still trying to figure all of this out. Maybe we should keep a list of “unrelated” ailments that we all have in common. It<br> is so great to have you guys, all I could imagine was that nothing had changed and I would go through a repeat of what I watched my mother and aunt go through, but everyone seems vibrant and there seems to be hope and new treatments. Seems like the immune<br> system is totally confused, it is busy attacking itself so it ignores what it should be attacking. And like someone said before, did the chicken come first or the egg? Guess that is my question. We have one really great researcher and I am going to set him<br> to the issue, he works on immunity. He travels so much, but he will show up again and I will corner him.<br><br> <br><br><br>

REPLY
irene5 Irene Estes | @irene5 | Apr 1, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

That is certainly a possibility, but there are a lot of things that can predispose a person to MAC. (Ex. Curvatures of the spine and that connection to the lungs and consequent inability to expectorate adequately thus encouraging a breeding ground for those critters.) So sorry about your head! Feel better. Irene

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Apr 1, 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

Jump to this post

<br><br><br><br><br><br><br><br>thanks for the encouragement, if you saw my earlier post I took your advice, I got very tired of the nonsense, so I just went to the middle of the pulmonary<br> office suites and to the friendliest secretary, DVD in hand, and loudly but politely, asked if any of these doctors knew anything about infectious disease, MAC in particular, I have a very ugly DVD here. I now have 3 specialists. I will let everyone know if<br> they prove to be any good. And then I got up this morning and went over to the competition hospital and connected with them and got 3 new medications. I am tired and my head still hurts, but this is my fight and I will fight it. And I am so glad for all of<br> you and your suggestions and kindness. Take care.<br> <br><br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 2, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

Hello. I was born immunodeficient. Had rheumatic fever at age four. I believe that is why I have been suseptable to MAC and pseudomonas. Plus have had bad case of Vally Fever that I caught when I moved to Arizona.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 2, 2017
In reply to @katemn "Need lots of help Posted by @shiell in MAC & Bronchiectasis, 1 hour ago I introduced..." + (show)
@katemn

Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don't think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don't mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.

I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine

Jump to this post

Sheill, a friend of mine could not tolerate the toby either, his dr put him on colistlin another inhaled antibiotic. He said that worked well for him.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 2, 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

Jump to this post

So sorry you are having a tough time. Hang in there, according to the others; it gets easier with time. -Hugs Terri M.

REPLY
Katherine, Alumni Mentor | @katemn | Apr 2, 2017
In reply to @katemn "Dear All, Just brought my husband home from the hospital .. doing much better. I can't..." + (show)
@katemn

Dear All, Just brought my husband home from the hospital .. doing much better. I can't thank you all enough for jumping in to care for each other and newcomers .. it just shows what a great community we have .. I am proud to be a part of it. Hugs to all! Katherine

Jump to this post

@lbigboy, Hi Linda, truth is I don't think ANYONE really knows EXACTLY how/where/when ANY of us developed MAC and/or Bronchiectasis .. Dr. Aksamit called the two of them chicken/egg .. who knows which came first. As to your other issues .. WHO truthfully can pin down exactly if/when they MIGHT be related to any of those other issues?? I have always had my suspicions re some of my own issues .. and at least Terri on our Forum had it confirmed at JNH that GERD can be a contributing factor to MAC. Some of our supportive Members have jumped in for you with their experiences/thoughts .. BUT I think we can drive ourselves crazy trying to figure out the "unfigured outables"! Give some thought to the train of thought that it might be more productive to put our energies into what we can control .. which is try to live as healthily as possible .. be as serene as possible .. and let go of what we CANNOT CONTROL .. the Outcome .. which is the MAC and Bronchietasis outcome.

That some of our various additional side medical issues will be researched in the future to see if/how they relate to MAC/Bronchiectasis .. unfortunately not perhaps even in our lifetimes. That if we "let go" it will lead to a much happier and serene life .. I hope this helps a bit Linda .. sending you a hug in this tough time. I know it is hard to let go of "figuring it out" .. but believe me .. in the "big picture" it really doesn't matter because even our doctors don't have all these answers! .. finding peace is much more important to our journey in my humble opinion. Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Apr 2, 2017
In reply to @katemn "Need lots of help Posted by @shiell in MAC & Bronchiectasis, 1 hour ago I introduced..." + (show)
@katemn

Need lots of help
Posted by @shiell in MAC & Bronchiectasis, 1 hour ago
I introduced myself and problem a few weeks ago. I don't think I had reached the occurrence yet that I am writing about today. I had a six month visit with my pulmonologist and he ordered a sputum test because I complained of coughing more. Sadly the result was pseudomonas with only tobramycin and furzas recommended. Half way through the tobramycin I thought it was going to kill me. Doctor went immediately to 10 day program with furzas. I have finished that and they are leaving the picu line in case of needed repeat. Help

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

Dear @shiell .. (and @windwalker, @tay4rake, @luvocean, and others dealing with Pseudomonas) I hope you don't mind but I am moving your post to an area where there are others dealing with Pseudomonas .. I am hoping you will receive more help there. I remember you are the caretaker for your husband so this must be a tough time for you.

I can only speak for myself. I was diagnosed with Pseudomonas 3/7/17. My Pulmonologist, Dr. Timothy Aksamit at Mayo Clinic, Rochester MN prescribed Cipro 500mg 2x per day for 28 days with the understanding that if that did not stabilize the Pseudomonas .. then we would do the Toby 28 days on .. 28 days off for a 3 time cycle. You might ask your Pulmonologist IF this might be an option for you? Sending you Hug and positive energy in this tough time! Katherine

Jump to this post

@windwalker, Terri, curious .. do you remember WHY he could not tolerate? Symptoms? Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Apr 2, 2017
In reply to @turbo "Thanks for the information I trust my pulmonologist and will proceed to get this treated!! I..." + (show)
@turbo

Thanks for the information I trust my pulmonologist and will proceed to get this treated!! I have faith and my name is Andrea nickname Andi!! To tough to keep down only one live to live I give it my all!❤️

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@turbo, YEAH Andi!! Isn't that just WONDERFUL!! Keep us posted on your progress .. we NEED good news on our pages!! Hugs and congrat to you! Katherine

REPLY
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