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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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Hi windwalker and all! This is interesting because IPF reminds me of NTM! I never heard of this disease until I got it! Well in 2002 it was the very first time I heard about IPF. That’s when my late husband of 29 years was diagnosed IPF. We lived in NY at the time and I tried to get him the best doctors in NY. But he did not get a transplant and he died 18 months later in 2004. I hope and pray that this will be available soon and people could get some help. He was only 54.:) life goes on! Rita.
yayaaz ----- I have a lady friend who is with National Jewish in Denver. Almost every month she goes for a bronchoscopy and says it really clears things out. I'm with Mayo's in Rochester and I've never had one but I was just thinking you might want to ask about this for you aunt. I'm not medically qualified to answer anything but I know what she does. She's had this for many years.
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1 ReactionThank you so much.
I have been on the big 3 for 3 months now. Because I have a doctor who is into preventive medicine - apart from my lung doctor, she stopped my cough last August within three days with supplements only she can get as a doctor. Find a doctor who is into preventive medicine - my blood tests show no damage to my organs. My lung specialist does not particularly approve or disapprove, and probably mentally pats me on the head. However my doctor on the Gold Coast is right on the ball. I coughed violently for 8 months, stopped within three days of seeing her, and have barely coughed since. I am tolerating the big three surprisingly well, and on the other days taking Dr. Elen's supplements. She gets them from New Zealand. By the way I am on the Gold Coast in Queensland Australia.
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2 Reactions@pfists Fingers crossed all right, heres hoping, just wish it diddnt take so long.
To windwalker. Thanks for the update and how encouraging that research is being done at Mayo with hope for the future!
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1 ReactionWhat exactly is new direction for MAC? Jane Brown
@migizii. My pulmonologist recently prescribed “the vest” for me too as I have difficulty removing mucus. I am not quite old enough for Medicare so I don’t know if your aunt will qualify, but I went through RespirTech in St Paul, MN and they were very helpful navigating everything! Their phone number is 1-800-793-1261. I got this company recommendation from Mayo Clinic in Rochester, MN. I do not know what areas they work with around the country, tho.. good luck in your journey.
@bevmac I've been coughing for a year and a half now. Do you know the names of those supplements that your doctor gave you that stopped your cough after three days? I haven't had any luck yet stopping mine. Nan (@nannette)
@yayaaz bless you! I could not tolerate the meds. I ordered Broncolin/Propolis all natural honey cough syrup from Amazon. Also
Order Blue Label Clear Lung from Amazon. It stopped my cough. Both are ALL NATURAL !
Do it !
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