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.
I live in Menifee C a. I just had an appointment with my PCP this morning. When I shared my decision with him, he pretty much took on the attitude that I was no longer worth much more of his time. I tried to have a discussion with him – he just smiled kind of pathetically, didn't answer me or pay much attention.
A lot of influence in my decision has to do with the poor health care, the lack of knowledge/experience and just apathy.
My ID and Pulmonologist push my follow up appointments so far out, I don't get a chance to get my issues addressed. I don't see anywhere where my strain has been identified. I'm not even sure what my severity is.
My PCP this morning gives me 2 years! EVERY SINGLE THING I have to initiate myself. I want to get a follow-up CT to see my progression. He left the exam room leaving me sitting there and didn't write me an order. WTH! I just left and came home to take care of the dogs and have lunch.
Oh! I also asked for some respiratory PT – he said OK – and didn't write me an order. He recommended I take Reishi Mushroom, and OregaBiotic for my immune system. Next week I go to se another doctor to get complete PFT's including 3D challenge. I'm thinking if he treats me like the others, why bother! Honestly, my dogs get treated better by their Veterinarian! Hey! Maybe I should discuss my issues with her next month when I take my dog for his B12 – HA!
@desperada I guess it is time to get another opinion or go to an academic center. Our group does have some good ideas for alternatives.
@desperada Absolutely, we are sisters!
@desperada Ha! Your vet might be a good one for you!
Funny you should say that! After reading similar comments on these posts, I made the decision to get the best care possible. I am in Southern California. Because I'm all alone, I have no one to watch my two little dogs. SO…..I was thinking I'd pack them up and go to Scottsdale AZ, rent an apartment for about six months and get an appointment at the Mayo Clinic there.
I called new patient appointment desk. Guess what? They told me no new patients indefinitely in the Pulmonary Lab! They told me to go to Minnesota!
It seems like everything is against me. I have crummy care here. Can't get it at Mayo. Honestly – WTH?
@desperada That is such BS! You NEED a good doctor. I will see what I can find out for you. So, your PCP said you have two yrs. Two yrs for what? Two yrs to live? Girl, you def need someone different.
Two years to live! Or two years to die! Take your pick!
@desparada University of California San Diego
9300 Campus Point Drive
La Jolla, CA 92037
Tel 619-543-6146. Is this too far for you? I will see if there is one in Riverside too.
I just called. Not taking any new patients either! I'm starting to believe these people have my name pop up when I call not to treat me.
I can't believe this.