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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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<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>
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1 Reaction<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>
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2 ReactionsThat 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
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1 Reaction<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>
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1 ReactionHello. 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.
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1 ReactionSheill, 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.
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2 ReactionsSo sorry you are having a tough time. Hang in there, according to the others; it gets easier with time. -Hugs Terri M.
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1 Reaction@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
@windwalker, Terri, curious .. do you remember WHY he could not tolerate? Symptoms? Hugs! Katherine
@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
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