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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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Terri, I thought there was no treatment for bronchiectasis.
@colleenyoung ...best i can come up with...
https://www.tandfonline.com/doi/pdf/10.1076/phbi.35.2.77.13284
https://www.ncbi.nlm.nih.gov/pubmed/9392889
and the following excerpt: from this article ( http://cms.herbalgram.org/herbalgram/issue62/article2697.html?ts=1533176966&signature=956770716fa69ff2ad1da3406ba5b62e )
The earliest, and some of the only, published descriptive phytochemical work that has been conducted on the North American devil’s club is by Kariyone and Morotomi,47 who described a sesquiterpene (equinopanacene) and a sesquiterpene alcohol (equinopanacol) in O. horridus. In more recent phytochemical investigations on O. horridus, Bloxton et al.48 reported a number of sterols and four sesquiterpenes, one of which (spatulenol) is novel to the genus. Kobaisy et al.11 described two novel and three previously described polyenes, one of which (oplopandiol) has recently been synthesized.18 These acetylenes all display significant antimycobacterial and antifungal activity49 and most are active against common bacteria such as Staphylococcus aureus, Bacillus subtilis, Pseudomonas aeruginosa, Escherichia coli, and Candida albicans. These compounds are also active against Mycobacterium tuberculosis and Mycobacterium avium, both of which can cause significant clinical tuberculosis, particularly virulent in immuno-compromised hosts, AIDS patients being especially vulnerable. Notably, these pathogens are also responsible for the epidemic status of tuberculosis in Canada’s indigenous population.50 Since many strains of M. tuberculosis and M. avium are also resistant to the most commonly used antimycobacterial drugs, there is considerable interest in the potential of devil’s club in tuberculosis therapy. Extracts of devil’s club inner bark also partially inhibit a respiratory syncytial virus.9
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3 ReactionsThat's so great, Terri! What a great feeling that must have been when you got that news! Nan
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1 ReactionIt was great news. Thanks!
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1 Reaction@ling123, I love it! Attitude is everything.
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1 ReactionI finally got my my chloride saline! We had such a long wait! But I’m excited to start using it. And I’m looking forward to feeling great! Thanks all for the wonderful group with so many good advice. Rita
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2 Reactions@gardenernj, a wholefood diet is unprocessed food. The meats are cuts of meat, not processed into hotdogs, coldcuts, etc. Fish. Vegetables and fruits are fresh or flash frozen. Avoid foods that come in a box more or less. I avoid gluten because it causes inflammation in my body and has since I was a kid. Wholefoods are basicly food left in their natural form without additives.
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1 Reaction@america Yay!!! So glad you have your saline. It might feel harsh at first and make you cough. Remember coughing is good because it brings up the gunk. If you find it too irritatiing at first, do as much as you can and build up doing the full vial all at once. Most people do alright with it though. You become used to it eventually and it doesn't feel harsh (burn). Let me know if you see improvement by using it.
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1 Reaction@alleycatkate Thank you for posting this. It was an interesting read. I like that NIH recognizes it's benefits as well.
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2 ReactionsThanks Terri! I will let you know! I’m going to try it today. Most of the pharmacies don’t carry it here in Tampa.. I’m not sure why but I am so blessed to finally get it.
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