(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

@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jentaylor Jen, oh what a journey you have been on .. and you know I have walked every step of the way with you .. I have your back Girl .. so don’t you dare worry and fret! You MADE IT! You are THERE!! Can you even believe it?! Now you just settle down .. have an attitude of gratitude .. KNOW that you are in good hands .. the BEST. Remember what I always say .. “Put your energy into what you can control .. and let go of what you CANNOT control .. the outcome!” You are where you need to be because that is where you put your energy .. NOW let go of the outcome! Absolutely LET GO of the SILLY attitude of ” feel I will be under scrutiny (& judgment, looked at like I’m a crazy mess!” .. that is just about the darndest thing I’ve heard out of your mouth .. NO MORE of that stuff! I only want from you PRIDE of all you have accomplished .. PRIDE of where you are GOING! When I think of where you were when you came to our Forum originally .. and where you are now .. I am just amazed!!

I am SOOOOO proud of you! You DID it! PLEASE keep us all posted. I am so excited for you to finally get some answers after all these years of slogging along, I am sending both you and your husband LOTS of positive energy and Hugs! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Hi Jen….soo happy for you to be at Mayo and to be seeing Dr AKsamit and the other experts! Hope it goes well and you get the answers you have searched for.
See if they still do the Mayo Tour…interesting things to see and to learn the Mayo History. As time permits or after keep us posted.terriD

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Jen you’re in good hands up there. The one thing I wish the first dr would have told me is that when you get this schedule of tests/appts/blood work, you can go to the desk and see if they can get you in earlier. I had tests and appts spread over 4 days and was able to get all testing done within the first day and a half. Then I was able to get 1 of my 2 addl appts moved up. Which was nice because they ordered additional tests and I had pretty much freeded up a whole day (which was quickly filled with more tests). Everyone is very helpful. Just ask as you don’t want to walk to the wrong desk to be told you have to go elsewhere 🙂 best wishes! Jill

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jentaylor and @jillnc, Jill .. Jen, Jill is SO correct! Pay ZERO attention to that schedule .. just go from one test to the next .. ask if you can get in .. it is AMAZING how quickly you can get them done. About the only ones you may not get moved is the Doctors .. BUT you can try! Good job Jill .. I didn’t think to Tell Jen this .. thanks a lot! That is a GREAT TIP!!

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Oh one thing I was told by someone who went to mayo was that if you need to leave on a certain date be sure to tell the first dr you talk to.  Doesn’t mean all your appts and test can be done by then, but at least they’ll know and can try to work with you.  I went on a tuesday morning and had to leave friday.  They wanted me to have a bronchcospy on monday and I told them no.  If I really needed one (which ended up I didn’t need for various reasons after consulting with other drs at mayo and my drs at home) I would have it done at home and have the results sent back to them.  It’s not the ideal option, but you have all kinds of options so as @katemn always says make sure you listen, as they are great teachers, but stand up for yourself too if you feel it’s needed.  Sorry for the second post.  I was there in early Dec so trying to remember tips I wish I had known 🙂  on a side note there is a bar and grill in one of the kahler hotels nearest the hospital part that has fantastic food.  Peach cobbler was awesome!  Also in univeraity shopping there is a soup/deli place that has all homemade items (2nd floor near the tunnel entrance as I call it) supper delicious!

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Jill I have to remember that .. bar and grill in one of the kahler hotels nearest the hospital part that has fantastic food.  Peach cobbler was awesome!   .. Yum! Hugs! Katherine

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@katemn

Hello All, brought to my attention something that I thought was REALLY interesting since our group has several times mentioned hoping that the day comes when various forms of research results in better treatment for our lung diseases .. so I thought I’d mention the below. It just confirms my belief the importance of having a GOOD working relationionship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power! Hugs! Katherine

Read: “The Washington Post reports that an article in the New England Journal of Medicine suggests patients are being fooled by clinical trials that wind up on the NIH’s internet data base without assurance that the trials are safe and promising.”
https://www.washingtonpost.com/news/to-your-health/wp/2017/03/15/three-women-blinded-by-unapproved-stem-cell-treatment-at-south-florida-clinic/?utm_term=.478d55d46029

and “”Unapproved clinical trials are able to list (their) study on a comprehensive database of clinical trials called ClinicalTrials.gov (https://clinicaltrials.gov/), which is run by the National Institutes of Health (NIH). At least one of the patients — and maybe more — believed that she was taking part in a government-sanctioned study,” he said.
“Paul Knoepfler, a stem-cell scientist, said that allowing the clinics to list their trials on ClinicalTrials.gov is ‘almost like a form of advertising for products that don’t have FDA approval. That’s really problematic.’ “

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Dear All, I would like to add an excellent caution from Colleen:

When directing Connect members to ClinicalTrials.gov database, I recommend that we include at least an abbreviated form of the disclaimer. Such as: “Please note that NIH does not independently verify the scientific validity or relevance of each clinical trial listing. It is best to talk with a trusted healthcare professional before choosing to participate in a clinical study.”

I totally agree with Colleen . . you will note in my original post ” It just confirms my belief the importance of having a GOOD working relationship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power!” Hugs! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Jen,
You can also get great tips from the Visiting Mayo Clinic discussions on Connect here: http://mayocl.in/2bGLTKj

Jill,
Would you mind adding your advice about telling the first doctor if you need to leave on a certain date?

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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CB3 burgers and brews

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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I clicked on the link but it looked like there were posts about a mayo clinic diet. Is that where you wanted me to put that tip about talking to the dr if you have to leave at a certain date?

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@jentaylor Jen, I am SO excited Colleen found this program for you .. she is the GREATEST!! I took a look at it and below are just a few of the things I found! “Mama” is saying.. you just get your fanny down there to the Dan Abrahamson Center and get started on this “Healthy Living program”! What a wonderful opportunity for you .. I didn’t even know it existed!! AND you are there with enough time to get started on the program .. get a wellnesscoach/mentor to help you when you get home! What a deal! I am so excited for you! So happy Colleen found this for you .. YEAH Mayo Connect!
(It starts out saying: Anyone know about Mayo Clinic Diet Experience .. but it really is about the Healthy Living program) Sending you a Hug! Let me know how things go! Katherine

https://connect.mayoclinic.org/discussion/anyone-know-about-mayo-clinic-diet-experience/

**Today I went down to Dan Abrahamson Center and took a tour, met my wellness coach, and signed up for the research cohort. You have to give samples and fill out a long questionnaire
** Living Program by mayo endocrinologist for type 2 diabetes and weight management. The Healthy Living program is supposed to help people with their chronic conditions. Some people get referred by cardiology. Lots of us with chronic conditions can make lifestyle changes if somebody shows us how. You actually have to fill out a questionnaire before they let you participate. You have to tell the truth about heart conditions etc. They don’t want to put someone on the stress test treadmill on first day or other exercises and have a cardiac event. So they are careful with people. I think the doctors actually look at your electronic medical record before you arrive. I don’t know what they do if you’re not mayo patient already. I think somebody was monitoring us when we did interval training on second day because we had to wear heart monitors with numbers on them.
** Thank you, Thank you, Thank you for sharing this! I did not know that such a program was available. I feel energized from simple reading your reply; Your energy is contagious!

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jillnc, Jill, that link is kind of deceptive .. It starts out saying: Anyone know about Mayo Clinic Diet Experience .. but it really is about the Healthy Living program. If you could leave the doctor info at @jentaylor .. that would be just GREAT! Thank you so much for jumping in to help others! Hugs to you! Katherine

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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@jillnc and @jentaylor I corrected the link above. It now goes to the discussions about Visiting Mayo Clinic http://mayocl.in/2bGLTKj
Thanks

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@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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Catherine have you already taken all the drugs and been through the protocol or are you still on the drugs and if you are for how long have you been on them and how long do you anticipate staying on them.? I’m just tired of major episode of pleurisy pain was unbelievable but it only lasted a day and a half. This morning I’m supposed to play golf but of course haven’t had any episodes in a couple of months and I had a little blood in my cough this morning not sure if I should play or not weighing towards it’s almost time to start taking the drugs but I so don’t want to I’m so afraid of all of it I don’t want to be that to be sickly and unable to function the way I normally do.

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@katemn

@jentaylor Hi Jen .. just wondered how you are doing? Just check in and let us know you’re still alive! Hugs! Katherine

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Hi, thanks for the tips! I can’t find my paper that says what floor of the Gounda Building I go to for my first appointment with Dr. Aksamit…. I can call when they open but thought I’d ask in case any of you online would be able to respond soon…

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