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Managing MAC without antibiotics
I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses - each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs - I walk them EVERY day - no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing - I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.
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Thank you. I was going to ask you which Mayo Clinic. But Mayo is out for me anyway. Arizona won't take any new patients and the others are too far.
I'm setting my sights on National Jewish Health in Denver. Rated #1. Still waiting to hear from my e-mail Pal in Colorado Springs.
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1 ReactionI JUST DESACLED BOTH OF MY COFFEE MAKERS YESTERDAY! HA! Is that pfunny?
We all try our own little things to get by huh? You go girl!
I am lucky to have an adjustable bed - so I raise the head at night and it really helps!
I use a mask in the garden now also. And I wore it taking out the dogs during the horrible wildfires here recently that were about 15 miles from where I live. One more freeway to jump and we could have been next! I don't eat after about 6 pm except for a BabyBel around 8:30 I have always been a "grazer" and eat mini-meals every few hours.
I'm not understanding your reference to "no symptoms of active infections." Is your MAC dormant? I thought it could not be cured.
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3 Reactions@desperada.....a dietician at NJH said that even decaffeinated coffee or tea can affect reflux.....she is right....l had a few ounces of regular ice tea last night and it even increased...the caffeine in it....my pulse rate. she said there is an item made of prunes to sub for coffee....no thanks....l would then have issues with the other end..ahem.
what is CBD???? Citrus is also a culprit....we are not to lie on right side....tdrell
Google CBD. It doesn't seem to be legal is your State, except for seizures.
@desperada.....it clicked in my brain what CBD is...and no ...Wisconsin will be the last state to legalize it.tdrell
@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
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1 ReactionThat'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!
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1 Reaction@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.
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1 ReactionI 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