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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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Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.
That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!
That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"
PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine
Heather, you are INDEED proof of our kind supportive community of caring people .. my heart warmed as I read your post .. I am SO proud to be a part of this Forum! Hugs to you! Katherine
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1 ReactionHi Janet, I was just thinking. You spoke of "doing your lung clearance exercises". Well, an interesting side effect has happened for me in this initial trial use of the Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com
https://smile.amazon.com/gp/product/B00JWTRA5I/ref=ox_sc_act_title_12?ie=UTF8&psc=1&smid=A35MWDCY6SWWSF
that I mentioned in another post. For my .. whatever my lung condition is .. I try to "breathe out" .. just as long as I can. This has resulted in me really coughing .. AND bring up sputum! ie "lung clearance"! An interesting side effect! It is kind of an unintended .. interesting side effect that certainly the athletes who use this little device to improve their lung capacity sure don't have! But I thought I'd mention it in case anyone else wants to give it a try .. for $30 bucks maybe worth a try. Since you increase the pressure as your lung capacity gets better .. I would assume the "lung clearance" might also continue? Don't know yet .. have not increased the pressure yet! Just thought I'd give a heads up! Hugs! Katherine
Thanks Katherine! Sounds like another one to try. That's exactly what I'm aiming for - cough up all that crud! And if I can up my lung capacity at the same time that will be a bonus. 🙂 We learn so much from you!! Thx, Janet
Kathryn, I've found that any dust flying around or even working outside blowing out the leaves or things like that affects me, too. I just bought electrostatic filters. They are suppose to reduce the amount of dust. There are even stronger filters but they can be hard on your HVAC system. That's what my HVAC guy told me. I don't cough anything up - never have. They had to do a bronchoscopy to get a sample. It's so nice to hear that that this time of year brings you such joy. It certainly made me feel great just reading it! Amazing what a smile can do to brighten your day. Such a simple thing but so powerful. Thanks for giving me that! Janet
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1 Reaction.. no promises Janet! I'm still experimenting .. but for $30 it is worth a try! Let us know what the device does for you .. I'll also post what it does for me in a couple of months! But I thought I'd let you at least know about this aspect. Hugs! Katherine
Anyone had flu and pneumonia shot while on this 3 meds? My PCP Dr. told me to get a this shot. I'm just want to make sure that they will not interfere with the meds I'm taking. Just got a good news, saw my Pul.Dr. last week and did CT scan and it shows the improvement of nodular on both lower lobes. I can see that the meds are working. Hopefully another 6 month I will get this critter out of my lungs. Thank you all for your kindness and support. Cila
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1 ReactionCila
My doc said to get a super flu shot and pneumonia vaccine and I'm taking the big 3 also.
Good news on your nodules. I have one, and it is a cavity. Which got thinner but not smaller the first 3 months. How long did the meds take to make a change. So encouraging when one of our group gets off meds and is doing well. Celebrate!!
Regards
Kay
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1 ReactionHi Cila, YES .. absolutely get both! I have gotten what is called the FLUZONE SHOT (flu shot) every single year since I turned age 65 .. and certainly since I've had MAC. It is really important as well as the pneumonia shot! We need to take every precaution with our lungs .. in fact I am at the point I now get "booster shots" for pneumonia .. that is how careful I have been!
Cila, I am so happy you see an improvement .. isn't that just great! You just keep on keepin' on Girl! Hugs! Katherine
Chapel Hill...that was it! Kate, I was thinking the same thing and wondering if Bruce and his wife have been tested to ensure they're not HIV positive...recommend first seeing an infectious disease doc who can both rule out this type of immunological infection, determine the presence of MAC, and treat all.