Untreated MAC
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 group.
@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.
@desperada Personally, it I was you, I'd drive over that mountain range and go to the Mayo Clinic in Phoenix, Az. (Mesa) you do not need a referal. You can check to see if your insurance covers you there. All tests are done in one day, maybe two. Test results are back the same day. At the end of the day, you meet with the pulmonologist and that dr will explain what is going on and get a treatment plan together for you. Bear in mind that a sputem test for mac takes about 8 weeks to grow and do a suseptability test on it. That is a test to see what antibiotics actually work on your mac. Not all mac is the same, so there is no set antibiotic to be prescribed. It would be wise to call your dr's office and ask for a hard copy of your lab results. You should keep a file at home for those. Tell them you want the results complete with colony size and the suseptibility test. If they did not have that info in your lab test, then they are not being accurate or thorough which would cause me to be suspect of how much they really know about mac. What are your thoughts?
@desperada No, don't say that! They are just busy with too many patients. Lung diseases are on the rise you know. Usually the ones not taking on new patients are the best ones; everybody wants to go to them. Have your name put on a waiting list while you keep shopping for a good doctor.
@desperada University of San Diego I believe has a very good pulmonology dept. I know that their sister medical university in San Fran. is highly rated for pulmonology.
Call the one in Florida and Minnisota. See if you can get in there. You don't need a lengthy rental. Your appts will only take 1-3 days. Perhaps have a dog sitter service come to your home…..