Misdiagnosed Mac

Oh, being colonized means you "have it" - just not at the level that is is making you ill. If you are diligent about nebbing and doing airway clearance, you may well be able to avoid having it invade enough to require antibiotic treatment.
I have a question about the levabuterol neb - do you need it to keep your asthma controlled? If not, you may get just as good a response from 2 puffs of a levalbuterol or Symbicort inhaler about 10-15 minutes before you neb. The Symbicort was a game-changer for me - total asthma control without the albuterol/levalbuterol tremors and rapid heartbeat.
Sue

I use the levalbuterol before the 7% with very good results. I don't have any tremors because I had the doctor switch me to .63 (weaker solution). I wasn't getting same results with inhaler. Maybe that combination is keeping colonization in check. Thanks for info.

"...disappeared...."
That's why I print all the reports from EPIC. If you can download a report as a PDF,
put it in the cloud.
Harry

I have bronciastasis and Mac. Been a struggle last few years. I have been on arihomizon and ethambutol for 13 months. Been suffering side effects nausea vision issues fatigue. Also given arikayce recently. I had it with side effects . I was still positive for mac on 2 drug regimen then prescribed arikayce. I started holistic approach About 3 months ago. I have been using garlic oregano cloves vinegar and using my aflo vest 2x a day for clearance. Last 2 sputum negative for Mac and 3rd no growth weeks into culture. Just goes to show you drugs are not always the answer.

Interested in your holistic approach-how did you discover this combo and how did you prepare it and how often and was it a tea you drank or something you inhaled ? I’d love to know the details please

Please share how you used the garlic oregano cloves and vinegar. I’d like to try it. Thank you.

Happy New Year @tracy111869 @pattysyarns and @ina
First, let's talk about Tracy's results - it is possible that her 3 drug regimen of azithromycin, ethambutol and Arikayce are the reason her most current cultures are negative, not the wholistic approach she is now using. I say that because her first two negative cultures had to be taken VERY soon after she switched. So the conversion to negative is more likely from the many months of medication than the few months of her new regimen.
We ALL want a safe and effective alternative to the difficult 3 or 4 drug regiment that is the current standard protocol. We ALL want to believe there are some simple, natural substances that will kill this infection. However, there is, as yet, not good way to figure out what natural substances to use, in what quantity (and how to measure the amount of the effective chemicals) and what avenue to use to get them to our lungs.
Here is what we do know so far ---
GARLIC - There is good evidence that the allicin in garlic may be helpful in reducing tuberculosis infectious load in the lungs - there have been some studies, but it was generally used in conjunction with antibiotics. There is more limited and older information about garlic and MAC. Please note that there are specific protocols they followed, and it is possible to inhale too much of the fumes and cause problems. There is less clarity about whether eating garlic cloves has an effect.
https://pubmed.ncbi.nlm.nih.gov/30537531/
CLOVES - There is limited, preliminary research about eugenol, the active ingredient in clove buds in outside-the-body studies regarding TB. I cannot find any recent scientific research about using ground cloves, or about cloves and MAC.
https://onlinelibrary.wiley.com/doi/10.1002/cbdv.202300895
OREGANO - Again, there is a study describing the use of the essential oil in fighting MAC - specifically using it to safely decontaminate surfaces to prevent biofilm formation.
https://www.sciencedirect.com/science/article/abs/pii/S0167701220305455
VINEGAR - 6% Ascetic Acid - the active component in vinegar - kills mycobacteria ON SURFACES with 30 minutes of exposure. Ther is NO EVIDENCE that consuming vinegar, in any quantity, has any effect on Mycobacteria in the lungs.
https://pubmed.ncbi.nlm.nih.gov/24570366/
There were some other highly technical studies of regarding clove, cinnamon & oregano essential oils in bovine mycobacteria that seem promising, but no mention of crossover to human studies.

Please note that none of these studies talked about safe dosage in humans for these essential oils, nor how/whether they survive the digestive tract to provide any benefit.

So, what can we do that doesn't involve antibiotics?
Here is a recent publication that evaluates and summarizes 50 other studies of "non-pharmacologic" treatments and their effectiveness.
https://www.sciencedirect.com/science/article/pii/S0929664620302035
What is the takeaway? You can see it below.

Please think hard about adding more substances to your body without proof that they are effective. Even ordinary things like herbs and spices, taken in therapeutic quantities can have side effects or interact with other medications.
Sus

Well I agree with a lot of your comments. I failed to mention one thing. I was on drug regimen for 12 months still getting mac positive cultures. Then I stopped went holistic as I mentioned and then now 3 negative cultures. Maybe it’s a miracle. Not telling anyone to stop there drug therapy but to me trying something natural is betting then all the side effects of these drugs. Good luck and God Bless

As I mentioned back to sue I am not telling anyone to stop their drug regimen. I was positive for Mac even after 12 months on drugs. I went holistic after research. Vinegar 2 tablespoons mushrooms about 5 a day cloves garlic a must and oregano along with the aflo vest helped me. Also in last 4 months gained 5 lbs. mac is a thin persons disease the more u put weight on the better you feel. Me anyway. I walk with my Aflo vest around my house spitting in the sink as I go. The more mucus out of your Lungs the better you are. Any questions please ask. Good luck God Blees

Thank you and I certainly intend to take the antibiotics and will happily supplement with natural approaches as well so did you drink this combo or what? And what sort of mushrooms-fresh, dried or mushroom supplements? Thanks again