Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@oldkarl I did get the second opinion and the treatment was the same.
@ling123 Actually, all the diseases I mentioned are part of the Amyloidosis Light Chain system. There are nearly 2,000 known variations on that theme. And bronchiectasis is just one of many results of the disease. I, too, have occasionally been diagnosed with TB, but it has never shown itself properly.
@jkiemen That is sad, but it happens a lot, especially in larger but lower clinics.
@oldkarl No, I have never had TB. Just being exposed to the TB bacteria. When I was diagnosed with MAC a few years back, they thought I might have TB. So they tested for both TB and MAC. Sputum samples came back positive for MAC, negative for TB.
@oldkarl not sure what you mean by larger but lower clinics?
Tdrell….may I ask what are your Gerd guidelines? Thks Bon
My heart aches for you! Going through all those things alone has to be depressing, at best. I stopped taking one of the three drugs last week; too many bad side effects. Not sure what my doctor will say, but like you said; sometimes we just need to take what comes; we know our bodies best!!
Oh Desperado, I could feel your pain as I read your post. Losing your husband is more than I can imagine. I am so sorry for your loss. Let this group be your tether as you try to right yourself amidst such overwhelming grief. I've found these folks to be a tremendous support system - especially for one that has no other family.
I encourage you to continue to listening to both your gut and your doctor. I just saw my local pulmonologist yesterday and his take on things is a 180 from what my doc at NJH told me last month. I have to weigh both of their opinions/recommendations and then make my own decision. Like you, I deal with chronic pain on a daily basis from unrelenting migraines and gastro issues that left me without a colon, and even though I tried twice, I couldn't tolerate the side effects of the drugs. Many, many years later I'm still upright, still walking 3 - 4 miles a day with my dog, still maintaining my weight, still able to breathe on my own, and still believe my decision not to wreck my body while trying to get rid of NTM is the best choice for ME. How I wish I were one of the "lucky" folks who took the drugs for 18 months, cleared the disease and lived happily ever after. I am both envious and thrilled for them. It's just not my journey. So I'll continue to do my best with my airway clearance and exercise and know that if a miracle should heal me I will be eternally grateful. As it is, I am grateful for every day I don't cough up blood, every day my 02 level is good, and every day that I can think clearly without the nagging brain fog that overcomes me at times. Bless you as you walk through this day!
-
Like -
Helpful -
Hug
3 Reactions@busybeans @dorma & @healthybon Don't be surprised if you don't hear back from these folks. These posts date from five years ago and I'm not sure if the original writers are still active.
Here's a tip when you are reading Connect- you can see when each post was written, so you know who is currently experiencing the same issues as you are.
Have a good day everyone!
Sue
-
Like -
Helpful -
Hug
4 ReactionsThanks for that info; I had not thought about that!