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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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Thanks Carolyn for this journal article! It had very useful information. Happy Holidays✨
colleen sorry I'm new to this forum not even sure I responded to you but I'm new to this Mac I found out few weeks ago. however I'm on ARIKAYCE.Only 9 days on the medication however I lost my voice its so frustrating I cried just this morning because my dr told me I have to be on the nebulizer with arikaye for 12-18 months and I haven't a clue if I will ever get my voice back and I'm scared. I know I hear about Stepfen lozenges however I'm going to call today to see if I am allowed to take them and if it will help I'm praying I don't go 18 months with no voice omg I can't thank you for listening to me
@jr2366 Jennifer this is Irene responding . I am sure Colleen will as well. Arikayce does make many of us lose our voices, but it does come back. If you take a break for a few days that should do the trick. It did with me, but I told the pharmacy and my ID doctor. Make sure you tell them if you do that. And those lozenges are fine. In fact any soothing sore throat lozenge is better than none. You also should probably ask your doctor why he put you on Arikayce first. Arikayce is a good drug for MAC but should be used in conjunction with other MAC meds. As a funny aside to your plight my husband always tells people he married me fifty years ago because he would never have to say another word. He is a quiet one, and I am a social person. When I lost my voice I think he was glad because I couldn’t nag him as much. It also helped me limit calls with my children who I love dearly but who call 24/7. Anyway, I think you will be good to restart if you stop for a few days. But talk to your infectious disease doctor or email him or her first. irene5
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7 ReactionsAnnie I'm sorry what is beyond air?
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1 ReactionYou won't. It may happen from time to time for a day or few days. Then it magically comes back. Gargling after treatment with warm salt water is helpful. Please don't worry.
Hi Jennifer. I just looked up Long QT. It is a heart arrhythmia that can be genetic, or caused by medications, or both. The meds used to treat MAC and other fungal infections can cause the arrhythmia as a side effect. Other common causes of long QT can be being dehydrated and short of magnesium and/or potassium.
Hi Annie. So sorry to hear that you are having this issue with long QT. I had similar issue and even fainted once. I had my heart deliberately stopped by parametics and re-started back in 2015. Mine was diagnosed as superventricular tachycardia. I wonder what the difference is between that and long QT? Anyway, I was never on the Big 3 meds, so those were not behind my heart issue. I also want to add that in all of my reading of case studies involving mac/bronchiectasis; many patients also experience heart issues. It seems to be one of the co-morbid 'sister' ailments that come with lung ailments. I hope you can get your heart straightened out; I know how scary it can be.
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2 ReactionsTerri & @anniepie - It is true that heart and lung ailments tend to occur together. I think about it this way - the 2 organs are interdependent much the same way as the stomach and intestines are, therefore a problem with either creates additional stress for the other. I have lost count of the number of people in my extended family have to deal with both, including my 2 younger brothers and my Mom, so my PCP monitors me very closely.
Sue
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2 Reactions@windwalker Hi Teri, I have SVT now, too. Previously always had Bradycardia. Would love to hear more about your experience!
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1 ReactionHi all, just on to vent a bit! I’ve been feeling good lately and have my yearly CT scan scheduled for Wednesday afternoon. I was hoping for a slight improvement when I go, BUT, last night after I nebulized with my 7% I started coughing up blood. Not “bubbling up” amounts, but enough to be uncomfortable and annoying. Did my Aerobika this morning and coughed up barely a speck of blood. Little specks throughout today, but, when I started to neb this evening, it started again. So I didn’t finish and won’t use the Aerobika. Very annoying, but mostly disheartening. I was really hoping for a little bit of an improvement in my CT scan. I’ve already emailed my Dr to let him know. Thanks for listening.
Gina K
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