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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast bacillus which mycobacterium are......and also "mycobacterium culture" which if I understand correctly is cultured differently than everyday sputum cultures.
Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach.....so NTM in there from drinking water or ice are not affected from an acid stomach environment.....stomach materials back out of stomach.....and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs....they stay and multiply and start causing symptoms.
The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others....does this all sound correct? TerriD
Replies to "Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast..."
Dear Katherine....any and everything I know about MAC etc is due to the motivation acquired from you! Terrid.
@tdrell, .. and Terri my Dear .. it is people like you who keep me going at 1am in the morning after spending over five hours at this! Now it is off to bed! With a hug to you .. and knowing I am getting one back from so many of you! Katherine
<br><br><br><br><br>I had never heard of the MAC in stomach being aspirated into the lungs <br>before reading these posts. I would think that the antibiotics that knock <br>it down in your lungs would also knock it down to low levels in your gut. <br>Especially since you take powerful drugs that go throughout your system. Will <br>have to learn more on that. My dr at Mayo said just aspirating stomach acid from <br>GERD can damage lungs.<br> <br><br>
I just watched the video from the conference in Colorado. Dr. Joseph Falkinham, III, PhD spoke. He researches mycobacteria. You can watch the video but he said boil drinking water for 10 minutes to kill it, turn your water heater to 130 degrees, drain and refill your water heater monthly, remove aerators from your water taps, take your shower head off and immerse it in bleach for 30 minutes every month, don't use a humidifier - especially not ultrasonic, get a shower head with big holes and don't use the mist setting and use the bathroom fan or open the window when showering, don't use the water/ice unit on the outside of your refrigerator, avoid using "wet" potting soil (the kind with peat), don't use hot tubs or foot baths (they have mist), spring bottled water is best. I learned A LOT and am going to try and do all this and go back on my meds for gastric reflux so I DON'T get NTM infection. Everyone should really watch the video
@gaylejean .. Gayle, what GREAT information for our pages! I am going to add the info to my File Cabinet! Do you have a link we can add to our pages .. that could be REALLY helpful! Again, thank you!
One thing I would warn people about .. "take your shower head off and immerse it in bleach for 30 minutes every month" .. personally I tried that. DESTROYED the fake "silver/chrome" coating on my pretty shower head. In doing a LOT of research I found there are almost ZERO all metal shower heads due to the weight .. in fact even the one all metal one I found had a plastic face. So forewarned is forearmed. Research the % bleach versus plastic PRIOR to the process!
Hugs! Katherine
I believe the link came from you https://www.nationaljewish.org/ntmvideos2016
@gaylejean, thanks Gayle, for some reason I did not find it directly from your link but in fooling around I found the below link which has some interesting things on iT .. but MY antivirus wouldn't let me open up the doctor's presentation! I looked up above .. oh oh .. a porn site!! So now I'm going to delete the below link!! Hmmm what you don't happen upon if you're not careful! Innocuous little search like that!
AHAAA .. FOUND IT!! https://www.youtube.com/results?search_query=Dr.+Joseph+Falkinham .. go to it folks! Hugs! Katherine
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@tdrell, Terri, you're just getting too smart! I had to google to confirm it .. but you are correct!
SPUTUM CULTURE FOR MAC
In patients who may have pulmonary infection with Mycobacterium avium complex (MAC), diagnostic testing includes acid-fast bacillus (AFB) staining and culture of sputum specimens. If disseminated MAC (DMAC) infection is suspected, culture specimens should also include blood and urine
The Notes I have on GERDS:
*From Member @tdrell Terri who was diagnosed at National Jewish Health for MAC in Denver * The reason MAC was found in my lungs when I had the bronchoscopy was that I have severe GERD and since it...NTM is in tap water....it had been aspirated into my lungs as I slept plus silent aspiration during day into my lungs. * .....Gerd fluid restriction is 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs.
*my understanding .. the connection between GERDS and MAC .. is that what gets into the lungs from the GERDS .. becomes a 'breeding ground' for the mycobacterium .. just like the sputum from Bronchiectasis becomes a breeding ground for the mycobacterium. So it really isn't the 'damage' .. it is really material that sits there and becomes a breeding ground for the mycobacterium because it is 'foreign' .. NOT expelled in a normal bodily process.
On hot tubs and showers: the THEORY .. no prove research is that when the water is "aerosolized" it is breathed into the lungs .. if there is sputum in the lungs .. the sputum becomes a breeding ground for the mycobacterium as the "aerosolized" water gets into our lungs.
Same with soil .. as you garden .. as the soil is disturbed it becomes "aerosolized" .. same process in theory,