Connect
Tired and weakness after wks
So I was diagnosed with a new strain of Mycobaterium. After being on the big 3 for 2wks I feel tired and run down, is this normal. The good thing is it feels like it is starting to clear my lungs.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
How are you feeling now?
I am so tired of my condition, every month I get really sick. I feel tired and weak. 🙁
I think I want to start big 3. My doctors keep postponing it.
Please sure with mw your experience with being on big 3. 🙏🏽
Thank you,
Suzanne
Hi Suzanne, I started the big 3, 2 wks ago. As far as stomach problems go I haven’t had any issues. I always make sure that I eat something when I take them. I feel a bit tired out this last week, but it’s not bad. I do feel like it is clearing my lungs up. I go to an infectious disease doctor who prescribed the big 3. I also have a great pulmonologist I have used for 20 yrs. He has me do albuterol nebulizer and a flutter valve. At this time I see no reason to stop the drugs. I hope this helps with your healing journey.
Steve
-
Like -
Helpful -
Hug
3 ReactionsI'm only on two out of three have been on low doses because of cachexia at 80lbs .The Drs i.see rotate so I'm never seeing the same one .I really don't like that much since all prescribed different doses and pills .I'm always sick ,tired ,and not gaining any ground ...
-
Like -
Helpful -
Hug
1 ReactionI am so sorry to hear that.
Thank you so much for your response. 🙏🏽❤️
I'm wondering what to do now ,I don't want to quit but I also don't want to end up with a feeding tube either .Wish there was more support around here since Florida has become one of the top states for ntm .Had an appointment at the NJC but no one to take me to Denver in freezing February so it was cancelled .now I'm stuck with a group of Drs who don't seem to be communicating with each other !!! I'm really fed up with feeling .My gp has no answer except that I should be tube fed 😂and that it was the covid vaccine that weakened my immune system .
I only started finding help when I went to a teaching hospital. I know I keep saying that, but I live in Oregon, and I thought we had good healthcare, but it wasn’t until I found out That I have pulmonary hypertension, And my cardiologist and my pulmonologist were simply ignoring it. Then I got fed up because I have been coughing for five years and asking To be tested for MAC, but my Pulmonologist wanting me to be tested for other things like Gerd and postnasal drip or anything that would keep him from having to do the bronchoscopy to test for MAC. After I found out about the pulmonary hypertension, I went to my pulmonologist and I told him directly I want to be tested for Mac I am tired of Coughing all the time and not feeling well. I had done some research and found out that at OHSU they had A pulmonologist who specialized in pulmonary hypertension, and an infectious disease Doctor who specializes in Mac. I am so glad that I moved everything over to OHSU because I became very sick right after that. I went into afib (after 2 years of not) And had to have a pacemaker. Then, I and I had a pulmonary embolism, and that led to heart failure. Then I had pneumonia. I am so tired every day, I have not started treatment for the MAC It took months to get into the infectious disease doctor. I wanted the one who was the best, so I had to wait. I see him this month. It has been a horrible long road and I believe that if my original specialist would have done something earlier I would not be in the shape that I’m in today. I really highly recommend getting the best specialist you can get in your area. Don’t let them keep putting things off. It does not pay off.
-
Like -
Helpful -
Hug
4 ReactionsCan you change doctor?
A good rapport with your doctor is very important for your overall wellness. I hope you start feeling better .
I understand what you are saying. If I had listened to my regular pulmonologist I would be much worse off than I am now. I did my own research and struggled through finding the right things and the right way to do them and I better off for it. I now have a Pulmonologist that specializes in MAC at a teaching hospital and the depth of knowledge and caring are much better.
JW87, You did not mention your CT scans and radiologist reads. There are signs the radiologist see's when they read the CT scan and the suggests a Echo and/or Echo w/bubbles for further evaluation. After MAC, I developed SVT after finally seeing some cardiologists.