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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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Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don't know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!
So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily "lung hygiene" . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine
Hi Katherine
Thanks so much. I got the same nasal spray from Mayo, and it really is great stuff.
I have a very small area of Bronchiectasis they told me. Maybe that's why I have nothing to clear from my lungs. It of course makes me wonder how I got MAC since I don't even take showers, only baths. I guess it doesn't matter.
I will help Heather and the group by doing some advocacy letters soon. I'm back to work now, so have been too busy with that and Holiday prep.
Our Forum is great source of info and encouragement. Thanks for all you do to help people out.
It's a strange disease. I feel like I only started being sick When I started the meds for MAC (big 3). I felt well till I started them on August 1. I've been tired and nauseated since that time. My MAC was found when a nodule was spotted when I had pneumonia, a CT Scan showed a cavity in my upper right lung. One spot! A biopsy done by a bronchoscopy showed MAC.
I think too, that a part of the pflegm and post nasal drip is stress related. The busier and more occupied I am, the less I have problems with it. Do you find stress makes it worse? If so, we all should relax 😉
Again, thanks to all of you and best of the Holidays.
Kay
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1 ReactionHi Kay, I REALLY do try to focus on serenity. There is such a mind/body connection that I don't even think science or we have caught up with yet. Plus for me in my life "denial" really works for me .. I really don't deal with either my or my husband's issues unless they are staring me in the face. I REALLY focus on living my life as happily and healthily as I possibly can .. putting my "energy into what I can control .. and letting go of what I can't control." We all hit hard spots in our lives .. I hit one a few weeks ago .. had to "pull up my big girl panties" .. and plow through it. For me part of it is this Forum .. trying to "play it forward" .. amazing how helping other people truly helps us ourselves!
Yes, it is a strange disease. With the nausea .. have you tried different timing/rotation of the meds? That helped me .. figuring that out .. with/without food .. even just a little snack helped. I also found I just plain had to listen to my body .. found I absolutely needed about 10 hours of sleep. Found I HAD to go to bed earlier .. respect the signals my body was sending me .. just HAD to take care of that one body I was given for this lifetime.
When you go for your next appointment .. REALLY ask about the Bronchiectasis. I did NOT .. I was so focused on the MAC .. I didn't even actually think about or realize the ramifications of the Bronchiectasis. Now I think I am actually suffering quite a bit from the "scarring of the bronchial tubes" .. AND that scarring is NOT going to go away. It was not until about a year ago that I even googled the issue and began to really understand the lifetime ramifications of Bronchiectasis. AND Dr. Aksamit says mine is NOT even very bad! Hmmm.. how on earth do people with a severe case handle the coughing?! Oh well .. attitude of gratitude! Happy Holidays to you also! Hugs! Katherine
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2 ReactionsKatherine
Actually YOU are the reason I'm doing better with the meds. When I first started them I was flat in bed I was so sick and had terrible insomnia.. You welcomed me to the forum and suggested I change times around on my meds. I talked to Mayo and we changed my Rifampin time, and I was able to sleep and felt better. I've tried a lot of variations on time and taking E and Z with food, but the nausea persists, better some days than others. My doc says no food w R as it decreases absorption.
I have asked about Bronchiecstasis to the 2 pulmonary docs I've seen. They say a very small amount in one lobe. I don't think that causes post nasal drip though which is my main bother except for drug side effects!
Again, thanks, hugs back. Have a great Holiday.
Kay
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2 ReactionsHello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same "cocktail" as many in this forum. I recovered and felt very well...until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much "stuff" as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!
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2 ReactionsHi Cathy! I was diagnosed with MAC in 2005. Pretty sure I caught it in a hottub. Mayo treats it with alternating month antibiotics. 28 days on tobramycin, then, 10 days twice daily cipro 500 mg twice a day. this seems to keep the infection at bay.
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1 ReactionHi Paula, are you a Mayo Clinic patient? And was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs?
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1 ReactionHi Deby! Where did you get treatment?
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1 ReactionHi Melissa. I believe your treatment was supposed to include a third anti-biotic along with the other two. I think it is called rifanpin or something like that that. Raynaud's is an auto-immune disease and as such leaves one suseptable to weird infections. Def get to the Mayo.
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1 Reaction@windwalker , I hope you don't mind if I put this answer on our Forum as then it helps everyone!
The nasal spray I get from Mayo is what is called a "compound prescription" meaning the pharmacist actually prepares it themselves. If you doctor prescribes it .. you have to ask a pharmacy: "Are you a compound pharmacy? Do you know of one and what is their phone number?" Then you can have the prescription transferred to that compound pharmacy from where your doctor faxed the prescription.
The nasal spray must be kept refrigerated and is:
Mometasone 0.033%, Ipratropium 0.02%, Diphenhydramine 0.033% Kit
Problem .. when I tried to get my prescription refilled at a local pharmacy they declined .. said they did not have the "kit" which is essentially the bottle and nasal spray portion .. not the ingredients. So this may be the issue you run into. Best to you! Katherine