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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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I have been boiling my drinking water. I have well water. I thought I read in one place well water was less contaminated with MAC than city water. Had to do something with "pink film"
Dear Windwalker,
Check the spot of the lungs on your feet. It is located on top of your feet above your toe. All the flat area above your toe or the palm of your feet. Have you tried Gonko Biloba for energy?
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1 ReactionHi @nick52 what do you look for above your toe in the flat area,, if you have lung problems? Bruising?
Ashwaganda is also recommended in Dr Balch book. He says it is medically used for stress, immune support, memory, enhancement, ostheoarthritis, aging, anemia and fatigue. It’s an excellent stress hormone balancer” . It is worth to try!
In NB we can have it tested at the hospital lab.
Ginko Biloba
If you have painful spot. You may feel little lumps also
@windwalker thanks for the info. Did I do that right? I didn’t know that!
Anyone know how I can get one email a day, with the posts of that day? Can't handle the bombardment of so many...I'm trying to cut back on emails...
HI TERRI, CHECK THIS OUT, LOTS OF TRIALS, BUT NONE WITH NITRIC OXIDE
CDER DRUG INFO
9:58 AM (7 hours ago)
to me
Dear Christa,
Thank you for writing the Division of Drug Information in the FDA's Center for Drug Evaluation and Research.
You may find information regarding mycobacterium clinical trials being conducted in the United States in the U.S. National Library of Medicine (NLM) clinical trials website at: https://clinicaltrials.gov/. If you search Mycobacterium under Condition or Disease and select United States under Country, information will populate for those clinical trials.
In general, drug companies seeking to sell a drug in the United States must first test it. The company then sends FDA the evidence from these tests to prove the drug is safe and effective for its intended use (i.e a specific use). FDA then reviews the company's data and proposed labeling. For this information and more on the FDA approval process, please review the following FDA page: http://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/default.htm.
Best regards,
EV
Drug Information Specialist
Division of Drug Information | Center for Drug Evaluation and Research
Food and Drug Administration
For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter @FDA_Drug_Info
This communication is consistent with 21 CFR 10.85(k) and constitutes an informal communication that represents our best j