(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 If you don't mind my asking, how old is Jess? By the way, my sister's fiancee just moved in with her because his Alzheimer's is to the point where he cannot write checks or conduct business without her help. His dad had it also. Her fiancee is my age, 59.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 If you need extra support, Connect has a Caregivers group led by @Indiannascott, he is a wonderful guy. There may be one for Alzheimer's as well.

Liked by Jamie Olson

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@flib

Thank you so much. It takes a while to master the vocabulary.

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@flib I hope you get back to the gym. Not going will perpetuate the weakness.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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I applied for disability because of this illness and I got it. I'd like to know more about getting on Medicare earlier. That would be awesome and help me out with my treatment. Right now I'm so limited to Dr.s and hospitals. It make a lot of stress for me.

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@flib

Thank you so much. It takes a while to master the vocabulary.

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Yes I know those days. I've learned not to use up my little bit of energy fighting them. I cave and rest, read, nap. But what is still very difficult for me is making plans with friends. Too many times I've had to call at the last minute and cancel. I've lost some connections because of this. Few people can understand how I can be able one day and not the next.I know some think just buck up and get through as if the weakness is, in part attitude. I've stopped trying to explain, in fact, it is somewhat a mystery to me,

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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My husband turns 72 today. He was diagnosed with Alzheimers in October 2016 due to the Neurologist in Orlando ordering a pet scan where amyloid plaques were discovered. Jess has been showing symptoms of a mental problem since 2013. Sounds like your sister’s fiancée has early onset Alzheimers due to his young age. I have read many books about the disease and chatted on a few social media groups. My husband has some short term memory problems but most of his problems are due to confusion. He has maintained his same easy going personality regardless of all of his health problems, which are many.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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Terri, I am sorry to hear you were diagnosed at age 40. That is very young. Did you live with a smoker and possibly got your COPD from second hand smoke? I am not familiar with Alpha-1 deficiency. Jess’s brother had Diabetes Type 1 and also COPD. The Diabetes put him on a fast track and when he had a flair up last November, he was hospitalized for 10 days before going in to Hospice. He passed away a few days later. It is a shame that your Mother passed away at an early age of 58. Smoking puts such a hold on people. I lost my Mother at her young age of 45 due to breast cancer. I feel very fortunate to be healthy and I am 69.

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@suzie2017

I took my husband to the Infectious Disease Doctor yesterday. He said there is no way to correct his collapsed left lung because it was caused by excessive secretions. He said the secretions will continue. He is holding off on prescribing the MAC treatment until he gets the report from Colorado on the secretions that were extracted during the bronchoscopy. One report has come back already showing he has pseudonymous again. He is now on Cippro and the ID Doctor wants to wait until the Cippro is gone plus 7 days before he begins the treatment. He also said he wants to see all of the medicine bottles (there are many) so he can do a good analysis to make sure the MAC treatment will not interfere with his current regiment. My husband was fully dressed and weighed in at 115. He lost 3 pounds in 2 weeks. He is very thin and weak.

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Our son left for Colorado early this AM. I miss him already because we probably won’t see him until the holidays due to him and his wife moving from CO to the State of Washington. Our other son was with us for 6 months and left about 2 weeks ago. I like getting back to the normal routine but when one of the boys is here they are real supportive and do whatever I need around the house. However, it keeps me strong to be on my own. I have a sister in law here in Sebring, FL and a brother, who is not helpful at all, in Northport, FL. Do you live in Jacksonville? Do you have a good support group nearby? You are extremely helpful to everyone in this group.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 I was raised by two smokers. My mom ALWAYS had a cigarette burning in an ashtray beside her. They smoked up the house terribly. And traveling by car was like being tortured in a smoke box. Doctors tell me that growing up with so much smoke def contributed to my health condition today. I have always detested that habit.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@suzie2017 There is a lot to be said for an easy going personality. I would imagine that makes caring for him a bit easier. I have a friend who has Alzheimer's and it was obviously coming on at age 38. He would tell me the same stories over and over and over. His mother and Grandfather had it as well. He is 59 now and on disability.

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@flib

Thank you so much. It takes a while to master the vocabulary.

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@flib I am right there with you. It is hard to make plans ahead of time. I too have bailed on people or just refuse to commit because I cannot count on the energy level. I have lost two friends over it. One was a close friend who hasn't spoken to me since April 5. People don't understand; hell, my own husband doesn't understand. They don't get it. I know it looks like we must be faking this because we can shop all day at a Mall one day, and then the next day; can barely move! It is as if someone had pulled a plug out and every ounce of energy has drained out. It is very weird. I now try to pace myself. I allow myself ONE fun (active) thing to do a day. NOT go to the gym, then out on a boat, then out to dinner……..Outtings aren't the only thing I have to pace. I pace everything. Do you find it takes you way more time to get things done than normal? I find that I do things in stages, like little hurdles. Do a little, rest a little, do a little, rest some more. Then there are the odd days where I do have energy and go all day. I think every one of us on here knows exactly what we are talking about.

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@tutti I am so happy that you got your disability. Now you can devote your time to your health. There is a two year waiting period before you can go on Medicare unless you are on dialysis or have Lou Gehrig's disease. I can only suggest perhaps using charitable organizations that help pay for drugs and treatment or go to non-profit health centers like the Mayo Clinic, Cleveland medical, and others like them closer to you. When you go to a non-profit institution, they tend to charge less for services and work out a payment plan. The Healthwell Foundation has helped me out tremendously with a very expensive medication. If you want to share what you need help with, perhaps I can help locate some resources.

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@colleenyoung i totally agree with you Colleen. Gaelawree brought joy and light to this group! Speaking about her passion was Thanks for understanding that we are more than our disease! 

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@suzie2017

What does MAC infection do to the body if the patient does not seek treatment?

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@tutti I'm on disability and Medicare…started at age 61…what would you like to know?

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@gaelawree

Hello group, my name is GaeLawree, I was just diagnosed with Mycobacteria Avium Complex (MAC), I haven’t started treatment yet, appt with doc next week. I am 66 & have had shortness of breath for a few years. I was diagnosed with COPD & got progressively worse. I had to really push to get doctors to find the MAC. I don’t seem to have other problems. I am active as much as I can be. I have horses & ride three times a week & I like gardening. I have a stationary bike to ride too. This diagnosis gave me hope of getting over this but as I researched it I got worried, I’m worried about the long term antibiotics. I have hypothyroidism & Hoshimoto’s & went through a 9 month protocol & got that under control. Now I think the treatment for MAC will really mess that all up. I have read a lot of previous posts & learning a lot. I am glad I found this group because I think this treatment is going to be tough.

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@windwalker Hi Terrie, ya it’s actually going to be easy for me since my son has a inversion table I can use. An adjustable bed would be helpful or get a piece of plywood & create a slated surface.

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