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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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@windwalker oh for sure...HH is not known for its medical care for sure...such vaca spots are not designed for year 'rounders...hope you can move in the near/mid future...
@boomerexpert , For now, I travel to Jacksonville for my routine check-ups for all of my issues. Any problems arise, I call them on the phone. If I become seriously ill or get near time for a transplant, then I will move. I am ok for now.
@joan912, Joan, if Dr wants him on it, and Kaiser refuses, try hounding them constantly. Sometimes that works. Explain to them that what he has is considered an orphan disease. When that is explained to insurance companies, they sometimes will cave.
I was on inhlaed Amakacin and had next to no side effects, just hoarse in the beginning, so may be ok for your husband. Good luck.
@bschaper2, Barb, tap water is not always the source of MAC, but more than likely is. I think the distilled water in your keurig is fine. Just know that distilled water has no mineral content, that is why spring water is preferred. Just need to make sure the spring water is really from a spring, and not another state's tap water. It is recommended that your hot water heater temperature be turned up to 130 degrees or higher as hot water tanks are a favorite breeding ground for mac. You are more likely to get mac from your shower than drinking the water. MAC's favorite way to get around and infect is by way of vapors, or steam from the shower. That is easily inhaled. It is also recommended to soak your shower head in vinegar every six months for a few hours to kill the mac's biofilm inside of it. You can either remove the shower head (recommended) or fill a baggie with vinegar and twist tie it around the shower head neck.
@windwalker - thank you for this info - I have done the shower head, and replaced my water heater which is 130+. Wasn't sure about the purified water. Good description!
Please remember NOT to drink water filtered through refrigerator machinery. Machinery warms it before it cools it and the bacteria thrive in that environment.
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2 Reactions@windwalker how long is that drive? Understand the wait to move until absolutely necessary...moving unfun...
You eat oatmeal lol
They do! Check NAET food sensitivity!