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DiscussionManaging MAC without antibiotics
MAC & Bronchiectasis | Last Active: Feb 19 4:09am | Replies (115)Comment receiving replies
Replies to "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..."
@desperada I don’t have any weight loss, night sweats, fever, fatigue or constant phlegmy cough. I was originally diagnosed when I had surgery in December 2016 to remove and biopsy a lung nodule that they wanted to make sure was not cancer. I had never even heard about MAI/MAC before that. I had a 3 day sputum test last summer and it showed traces of both MAI and MAC. Other than the lung nodules, (that are small and come and go), which my Dr thinks is due to aspiration from GERD, I don’t have any symptoms of being actively sick. That is why I take as many precautions I can to avoid being infected with any additional bacteria. I do have bronchiectasis also, so I use the Aerobika twice a day to clear my lungs. When I go to my next appointment I’m going to ask about using the nebulized saline to make my lungs a less habitable place for bacteria, which I learned about from others on this forum. I have heard mixed things about whether MAC could be cured. Some have said they took the antibiotics and remain MAC free for years. Others have gotten reinfected. I guess it depends on the health of your lungs and if you have a comorbid illness that makes your lungs a nice place for the MAC bugs to thrive.
So sorry about the wildfires in your area. I’m glad it’s staying away from you. It’s a good idea to wear a mask. I also wear a mask when we go on motorcycle road trips. I don’t want to take a chance inhaling any of that road dirt that gets kicked up especially through road construction sites in many states. We just came back from a road trip to Canada. I also wore my mask when we drove through farmland.
Gina K
That's very interesting. I don't have weight loss - in fact the opposite. I have fatigue but that's always been the case from my Firbromyalgia. I don't have phlegmy cough either. Where do you see this doctor?
I think where I live they only know one thing to do - bot experienced enough or exposed to many cases - so they just diagnose the worst case scenario.
I've always been kind of phobic about germs. I'm always removing that rubber gasket from the sink disposal - harbors so much crud under there in the folds. I also throw away the fabric softener dispenser and replace it since I removed it once and discovered all black mold under it! I called P&G and it took me forever to find out the MAIN ingredient in it - they told me it's animal fat! That's what makes the fabric soft. They show the ingredient under it's chemical identification so people don't know. I only use the "free and gentle" version now sparingly, combined with plastic dryer balls. Honestly - everything is toxic. Now my Cheerios have Roundup weed killer in 'em. WTH!
They mentioned getting me this compression vest because I have bronchiectasis also.
I see lots of bikers here in SoCal. They all wear masks anyway - I like the ones that look like a skull face - HA! Funny as heck seeing them on the freeway! They look like one of Captain Sparrow's friends!
They have this HUGE biker rally for ladies only every year here in Joshua Tree. They come from all over. It's like a three or four day event. No guys allowed and I think you have to have a bike.
I grew up in Ontario. You must have had a great time. I used to go on bike trips - then my back got bad. Couldn't find a passenger seat that reclined - darn!
@desperada I see Dr. Kamelhar in NYC. He was one of the specialists listed on the NTM website. I’m sure there are lots of bikers in SoCal, you have the perfect weather for it. I wear a mask I purchased from Cambridge Mask Co. It filters out PM2.5 particles. It was a mask recommended by the original mentor of the MAC forum, Katherine. That rally in Joshua Tree must be great. Maybe if I’m ever in the area around the time of that rally I’ll get to it. I usually remove my fabric softener dispenser and wash it because it gets clogged up, but I’ve never seen mold in it. That’s kind of gross! With compromised lungs we have to watch out for breathing in any additional mold from everything!
@desperada Brochiectasis is incurable, which is one of the major reasons that people are infected with MAC. MAC can be cleared, by itself without treatment for some or by antibiotics for others. It is also possible that the infection is kept at bay with no further development necessary for long periods of time. But It can also recur for those with bronchiectasis or other diseases that weaken their immune system.
I think it is THC that is illegal in some states, not CBD that you can buy online.It has no high effect. I've taken it for several months...helps me sleep and may be helping my lungs. I get a cat scan next week and I'll see then. Flib
Good for you - hope all goes well. I REALLY do! Let me know - please.
A lot of people jump to the conclusion CBD is "dope." They actually have it for animals and it works great treating them after their chemo.
Before I responded I checked that State - and CBD IS illegal for Medical use unless it's for seizures. They actually did get that specific.
Here in California beginning Jan. 1 it's all regulated so any harmful chemicals and/or pesticides are tested for, and the product cannot be sold unless it meets VERY stringent requirements for purity, dosage consistency and accuracy. THERE CAN BE ZERO TRACES OF THC IN THE CBD. The farms are inspected and they take soil and water samples.That's why I prefer not to buy it online. I know if it's in a Licensed Dispensary it's been tested and stamped.
Helps me sleep too and seems to suppress my cough. Without any hangover or side effects - that's the best part. I always feel better if I get some decent sleep.
You keep taking care of yourself - good job!
@ginak...hi there....this is the first time I have read about coffee machines harbouring MAI in the tubing...other areas mentioned...yes..including pop dispensing machines..can you tell me where you found this information.......thanks
@megan123 Hi Jennifer, I’m not sure where I got that information. I’ve read so many different things, all from on-line searches, it may or may not be accurate. I choose to err on the side of caution. Water from coffee machines is not boiled. In my Keureg, the maximum temperature is 192 degrees, and I can never completely get all the water out. Unless I was running vinegar through it every couple of days I would rather not chance it. I can spare the extra 8 minutes to make coffee the old fashioned way. I guess we all make choices about how cautious we all are. I still opt to take showers because it’s just TOO difficult to get long, thick hair washed and conditioned in the bathtub. And I know the shower is probably the worst place because of the water vapor in the air. Sorry if I’ve mislead anyone.
@megan123
I might have seen it on the news.
“Microbiologist Roman Golash tested the cup containing coffee grounds, underneath where the coffee comes out and the water reservoir. He found bacteria including gram-positive strains like staphylococcus, streptococcus and bacillus cereus. He also discovered enteric bacteria, or bacteria of the intestines, like e-coli.May 11, 2015
Nasty germs may be lurking in your coffee maker - CBS News
CBS News › news › nasty-germs-may-be...
“It's not just Keurig and other single-serve machines that could be growing swarms of germs — traditional coffee makers will also house bacteria, yeast and mold if not sanitized correctly, because the hot water used in the machine isn't enough to decontaminate the pot.May 21, 2015
Your Keurig Machine May Be Covered In Bacteria And Mold | ...
https://www.huffingtonpost.com › keurig...
@desperada.....it clicked in my brain what CBD is...and no ...Wisconsin will be the last state to legalize it.tdrell