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.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
@desperada ….doctors that cannot handle input from specialists hat l would want to go to. I live in a small city near Milwaukee WI,I am fortunate to have had even before Medicare with supplement, insurance that has allowed me to go wherever I wanted. When I got back from NJH in 2017. the local pulmonologist was irate l had had the sleep study at NJH even though he had noit scheduled me for one after discovering the issue for 6 months…he too yelled etc…..l switched to the other system we have in town to a doctor who worked with input from NJH.@tdrell
I have gone to UCLA for MAC and gotten excellent treatment.
I have mac and live in Milwaukee. I have a good doc at froedtert and I will not tolerate with any doctor treating me bad. I already feel bad enough sometimes and I don't need the pile on.
@sophie1019…who do you go to at Froedert??? I am in West Bend…we have choices here….Aurora as well as Froedert! Tdrell
@tdrell Hi Terri. That is an excellent example of self advocacy.
@desperada Your area sounds a lot like where I live in that the doctors don't want to take on 'head scratching' cases. I live in a resort area surrounded by 50 or more golf courses. I am convinced the docs here are only here for the golf, boating, and socializing. You think I am kidding? Here is how my annual checkup at my local cardiologist went. Dr.: "your meds still working alright? No more palpitations? Good!" He then wrote another year's worth of heart prescription and walked out of the room. He NEVER used his stethescope to listen to my heart!!! Every dr does that, whether they are a heart doctor or not. A heart dr that doesn't listen to your heart??! I took an elderly sick neighbor to his dr appt. He told the dr that he keeps getting dizzy and falls down. The dr said "hmmm, that's weird" and nothing more. I was flabbergassed. Now, I only go to the Mayo for everything. That way, they have a complete record of what is going on with me and I get superb care. Fortunately, I don't have to see them very often. I feel your pain in dealing with incompetant locals; I absolutely get it.
Just to elaborate on your helpful suggestion about things to avoid – or "no no's" as you refer to them.
I make my own blend of ground coffee – 75% D-Caf, 25% regular. I have one cup in the morning. In the afternoon I have a Decaf K-Kup.
The chocolate I consume is a piece I shave off from my CBD 2 inch square of chocolate – about the size of a small M&M. I can switch to CBD water after I have finished what I have.
For now those are things I enjoy and that bring me comfort.
I think the "culprit" is the caffeine which I am aware of and was why I created my blend to reduce my caffeine consumption.
@desperada I still drink my coffee in the mornings, decaf also. But I don’t think it’s the caffeine so much as the acidity that’s bad for the acid reflux. But I stopped using my Keureg because of the biofilm buildup in the tubes inside of the machine. I am back to perking my coffee the old fashioned way on the stove. Even though I cleaned the machine often with vinegar and used the descaler, I didn’t want to take the chance. The MAI lives in the biofilm inside tubing in water coolers, coffee makers , refrigerator water dispensers and ice makers, etc. I avoid those things whenever possible especially at home. When I’m out I do the best I can to avoid it but I’m not that crazy about it. I also garden with a mask on to avoid MAC inhalation from soil. I was never prescribed the antibiotics because I have no symptoms of active infections. I just try to do the best I can to avoid any additional infection, I try not to eat after 7:00 pm, and I sleep on a wedge to avoid the acid reflux silent aspiration at night. I don’t take any acid reducers because the acid kills the MAI that we ingest. I just try not to ingest too much.
@desperada, Hi, There is a nice little Marriott right next to the Mayo Clinic. You can see the clinic from the hotel, walking to the clinic is an easy short walk. There is a nice little desert trail from clinic to hotel if you want to take that. Good luck. Renee