(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@boomerexpert, You are right. NTM infection is not rare. I believe a lot of it is misdiagnosed or undiagnosed. There was a push for pulmonologists to test every patient with chronic cough for 'Alpha-1' and now most of them do. I feel like it should be automatic that every patient get a sputem test and samples sent to the better labs that test for mycobacteriums.

@heathert, I have no answer for your dr's decision. I have no mucous either, but I will follow my drs treatment plan. He wants me to do it and I will because all that he has recommended for me since 2013 and brought me to better health and a much improved quality of life. Mind you, at Mayo, each patient is treated with individual treatment plans. It is not a cookie-cutter kind of place like so many others are. I have more than one lung disease going on, in fact, I have four. So my doctor feels the saline will be benificial for me. @alleycatkate posted that saline chart and the % that kill certain types of mycobacterium. You could print that out and show it to your dr. to open that discussion again. Or even ask why you shouldn't do saline.

@flib, There is treatment for bronchiectasis i.e. antibiotic prophylaxis, but no cure, no reversal of lung damage. If one has bronchiectasis, you will always be prone to mac infections. Taking monthly antibiotics helps to keep the mac from colonizing and taking over. People with mac, but not bronchiectasis are more likely to erradicate it. I feel that the inhaled saline is a big player in keeping the lungs clear so that bacteria doesn't find it a welcoming home.

@heathert, Hi Heather. I have re-posted this article. I think the chart is in the second to last paragraph. If you can, print this and show it to your doctor. The saline is not pnly about the mucous.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

Has anyone seen the video yet from the NTM World Conference?

Thanks for taking the time to find and post these articles, @alleycatkate. I appreciate it.

@colleenyoung, @alleycatcate, @pfists, Good point that Colleen brought up. Always let your physician know what herbs and suppliments you are interested in trying. Not all things combine well. One can even cancel out the other.

@windwalker
Yes I have discussed the herbs I am taking with my pulmonologist.
He was "ok" with them. I'm pretty sure he thinks after a year and half of negative mycobacteria abcessus results that they are possibly the reason. But at the time I told him I'm not ready for the big gun antibiotics yet and wanted to try these herbs.
But every case is different and you should check with your Dr.
According to the my book "Herbal Antibiotcs" and web searches there hasn't been any negative side effects to the two I use by anyone yet.
But that doesn't mean that there can't ever be negative side effect. Also if your using any herbs I would recommend to make sure you use a supplier you can thoroughly trust. My herbs have been checked by a third party lab to make sure what is on the lable is exactly in the bottle.
If You have used antibiotics and they failed to work on your MAC it seems reasonable to give these a try to me.
Take care everyone!
Shari

Astonishingly, I can't get Rheumatologists to understand the importance of ordering a simple chest xray in addition to the usual TB test, prior to putting their patients on immuno-suppressing biologics (eg Humira, etc.)... it's not yet protocol so they look at me blankly when I urge them to do it...sigh...

@boomerexpert
Your so right about checking your lungs before and while on humira.
I was put on Humira 8 years ago with devasting results to my lungs. It was the beginning of all my trouble with infections. The first one Of Pseudomonas just about killed me before they figured out it was the humira. Then I got bronchectasis as a result and it was pretty much all down hill from there.
Shari