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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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Kathryn, what great ideas! I love your idea of watching a short comedy prior to going to bed .. frankly that would be good for the whole world! I also like to practice as I am going to sleep saying my "gratitudes" .. what I have been grateful for that day .. even if it is just that someone has smiled at me that day .. or that I saw a lovely cloud formation .. or that I had a fun memory of something. Whatever I could be grateful for that day!
Just on this trip I just took .. I met a woman who is in constant pain .. some kind of disease in her muscles and bones that causes never ending pain. Here she was trucking along with everyone else for 6-7 hours a day in 90 degree heat .. face dripping with sweat with the loveliest smile .. just unreal .. she might be at the end of the pack .. but by darn she was trucking along. I had such admiration for her .. never giving up .. always with the sweet smile and great attitude. Now THAT is something to aspire to! I will never forget it.
So Jill, I admire each and every one of our people on our Forum .. each trucking along doing their level best to cope .. finding different ways to deal with various issues ... sharing the methods they have found .. caring for each other. What more can we ask out of life than people caring for other people? I'm just glad we are all here! Hugs to all! Katherine
Kathryn, I don't know if it is just me .. the meds I take or just what .. but I also have night sweats. Prior to the MAC (I "finished" menopause at age 48) but still continued to ALWAYS have one hot flash per night. Then when I was on the antibiotics I had quite a few night flashes. They have returned periodically. It is kind of on and off .. so much so that I don't even think about it .. at night I just throw off the covers until I cool off .. at night we turn the heat low so that works,
I would mention it to your doctor .. but frankly I kind of think It is all part of our disease. Why don't others chime in. I can only speak from my own experience. Hugs! Katherine
Cila, just an FYI .. I have taken Aciphex since 2003 which in the med class of a PPI which Prevacid is alco .. in doing my due diligence I found:
1. TEST FOR VITAMIN B-12 If you use this medicine for longer than 3 years, you should develop a vitamin B-12 deficiency.
2. REGULAR TESTING TO MONITOR KIDNEY FUNCTION DUE TO PPI
John Hopkins University: This study concluded that the use of PPIs, which are commonly and widely used to treat conditions such as gastroesophageal reflux disease (GERD), is associated with a higher risk incident of CKD and AKI.
Because of this .. my Internist has checked for BOTH these issues. I take a Vitamin B-12 supplement .. and so far my kidney function is ok. But I just thought I would mention this for all of you since so many of us are on GERDS meds.
ONLY as an FYI a list of PPI'S could be:
* Available proton pump inhibitors include PP1 :
omeprazole (Prilosec, Prilosec OTC), lansoprazole (Prevacid, Prevacid 24-Hour),
dexlansoprazole (Dexilent, Kapidex) rabeprazole (Aciphex), pantoprazole (Protonix),
esomeprazole (Nexium), and. Zegarid, a rapid release form of omeprazole.
Just something to think about and chat your doctor about. Hugs to all! Katherine
Magnesium works well for me, too. I get the crystals to dissolve in warm water...one scoop does it, and it's yummy! Get it at my local health food store (in my case, Earth Origins) but could likely get it online as well.
katemn, thanks for this great summary, I have printed out and will have when l am seen at NJ....l have been on Nexium for over 15 years!
terrid
I also had night sweats at the beginning of MAC. I had googled before I knew and other than hormones, TB was listed as a cause. In researching MAC, after diagnosis, sweats was listed as symptom. I am 1 month off meds for MAC. Sweats are very occasional. They were so bad, I have had to change clothes and bed linens and would have almost every night.
Elaine K
Thank you so much for commenting on the night sweats. It occurred at the same time I was taking strong antibiotics for a cold and when I had another issue with my blood in my phlegm. I was anxious it would be new constant in my life - but so far so good the rest of this week. I am enjoying every day at school but not pushing myself at all in the evenings. My goal is to remain calm and yes - say thanks for all the good things that are a part of my life - and accept my body for what it can do and what it cannot do. I can not tell you how much I appreciate all your support. Kathryn
Katemn....I really am spastic with using this on line.. format...wanted to comment to your statement that you take calcium and get constipated from it...the best way to get calcium into our system...and absorbed the best I was told was to use Calcium CItrate....vs calcium carbonate...which also is more constipating. I have had to take supplements for Osteopenia/osteoporosis for over 35 years and learned about type to take from "bone doctors"... ( and getting a rectal fissure from the carbonate's constipation action) terrid
Re Night Sweats
A week or so after starting the big 3 I started to have short periods of feeling really hot, more like a hot flash. I do wake up in early hours of morning, and once awake a bit, I get hot and feel sweaty, sort of in my chest and back area. I don't WAKE UP swearing, it starts after my mind starts working. I sometimes feel a sudden flush and feel hot for 5-10 minutes in late afternoon or early evening.
When I look up night sweats, it says drenching sweating. I don't have that. I feel that mine might be related to one of the meds. Feeling hot, was an uncommon side effect of either E or R.
Anyone else get a hot flush a few times a day, or on waking? Think it's the meds or MAC? Thoughts?
The eye doc told me today, that bacteria are killed during their reproductive cycle by antibiotics. He said that since NTMs grow slowly, and have longer intervals between reproductive cycles, it takes a long time to kill them off. Not sure if this is true, thoughts?
Thanks all,
Kay Strand
I remember talking to my ob about night sweats a year ago. I just started taking the big 3 as you call them for MAC 4 months ago. So mine are not related to medication I feel. But maybe for some ppl it is.<br><br><br>