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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 on the big 3 for almost two months plus infusions of Amikacin. For the first month I was on daily infusions of Invanz for a large lung abscess believed to be created by MAC. My biggest complaint now besides fatigue and weakness is Vertigo....has anyone else been dizzy? I fainted coming out of a barium swallow given to me to diagnos GERD which apparently I also have in addition to the MAC, Bronchietusis and the Absess. Interested in knowing if anyone else is dizzy and carrying around what feels like a very foggy thick head. I’m going to Denver next month and hope they will get to the bottom of this.
I'm going to order some!
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1 ReactionI too am feeling very dizzy, foggy headed. I have been to afraid to drive as it Is so bad. I’m sorry you are suffering from this as well! Jae
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1 Reaction@windwalker....yes I did order some. I will keep you posted. There are tons of articles about it's usage with MAC....all reporting on it's efficacy.
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1 Reaction@hydrang3a , Hi. Yes! Foggy head comes with the territory.
@alleycatkate @windwalker888
Yes it's exciting to find herbal tinctures available that actually are effective at knocking down or out MAC.
This one (devils club - oplooanax) looks promising too!
I started testing negative after using a couple of different tinctures then this one. The ones I use are actually grown in Africa but available here in tinctures form. When I started them I had tested positive for Mycobacteria Abcessus the harder of the MAC's to treat. I had tested positive for that for one year on 5-6 different tests. Then after starting the two tinctures I testing negative for the next year and and half. Now I am still testing negative.
The ones I use can be used with or with out antibiotics. I haven't used any antibiotics with them.
There is no reports of adverse effects from the two I use and I haven't had any negative effects either.
I' am still using them but at a lower matenace dose now.
It nice that there are other options out there that are effective for some people who want to try something other than antibiotics.
Take care!!!
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1 ReactionAlleycat, I think one of the tinctures is devil's club. Could you name the other one. Thanks, Flib
@pfists ...I am so thankful to find alternatives...and happy for you that you are doing so well!!
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1 Reaction@flib ...Hi..not sure which tinctures you are talking about. I did order the Devil's Club....and also looking at the hepacleum maximum tincture (cows parsnip) but am not comfortable with that one yet.
@flib You are thinking of @pfists 'Shari' about the two tinctures. I'd like to know whoch ones she used also.