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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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@pfists so sorry if you've already provided, but which herbal antibiotics are you taking?
Hey everyone...please keep in mind that the vast majority of traditional medicine docs know little to nothing about other-than-RX-treatments. And few are interested in learning about them. Best bet is to find a great alternative medicine practitioner for guidance.
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2 ReactionsTerri, thanks for this information. I'm going to look into it.
thanks @windwalker for that information, very interesting. I have emailed it to my Dr and await her reply. What would I do without you!
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1 Reaction@boomerexpert There is a lot of truth in that statement. That is why I implore that people who are seriously infected seek treatment at a non-profit research medical facility. (like Mayo, NIH, Cleveland, etc.) because they are cutting-edge with up-to-date info. Anti-biotics do not work for everyone, so it is nice to have Alternative medicine as another avenue.
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1 Reaction@boomerexpert, I did buy some Ashwagandha yesterday.
Good. May your adrenal fatigue be no more now!
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1 Reaction@america, Hi! How did the nebulized saline go?
Yes, I’d like to know the herbal antibiotics as well for my aunt.
@boomerexpert l wonder if instead of a chest xray….a low dose CAT scan read by a Radiologist certified in reading the thoracic region is warranted prior to putting people on the immuno-suppressing biologic meds???tdrell