← Return to Panic Attacks with new diagnosis and fear of the unknown: What helps?

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@becleartoday

Hi Bon,
Nice to meet you!
I understand the anxiety that comes with this disease. Most probably, we have all experienced it at some time. As others have said, educating ourselves on trustworthy sites can be helpful. A good resource is the NTM Info & Research YouTube channel and their excellent webinars. Below is one example, however, Dr. Devon Smith from National Jewish Health has done many webinars as part of their Emotional Wellness series.
https://bit.ly/41ci1hS
Learning how to manage anxiety and depression with a disease that we will have for a lifetime is a worthy undertaking. One practice is to try our best to not get ahead of ourselves. Not all cases of MAC need to be managed with antibiotics. Airway clearance, exercise, healthy eating and stress management are always useful and in some situations might be enough. Talk to your doctor about a "watchful waiting" approach. Certainly, it will depend on your particular situation and going to National Jewish for a second opinion is an excellent idea.

Personally, I was diagnosed with MAC in 2017 and to date, have not needed to take antibiotics. I am presently culturing negative and attribute my current health to making lots of little changes. I see in a previous post you asked to speak with someone. I was fortunate to speak with a patient advocate when I was first diagnosed and that was life-changing for me. So, I like doing the same for others. I offer a short talk to help people put together a couple of items to discuss with their medical team. I do this as a form of "virtual community service." Contact me if you are interested.
BE well,
Linda Esposito

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Replies to "Hi Bon, Nice to meet you! I understand the anxiety that comes with this disease. Most..."

Hi Linda, I watched the video you sent…….it was very good. I would love to hear about anything you do to make your thinking better and not be afraid. I know you have NOT taken the antibiotics……I know my body would not tolerate them…..I have not, to date, really been fully evaluated and spoken to….and that is why I am very happy that I will be going to NJH. Just waiting to hear about when the appointment will be.
Because of my lack of knowledge about my condition, my mind goes to the worst scenarios….I have literally learned all I know so far from the Mayo blog…..and the people are so kind and helpful….
I am riddled with fear….usually interpreting things in the worst light. I wake up in the morning with dread, knowing I have to nebulize, knowing all that fluid will come out and it scares me. I know it’s good it’s coming out, but why is it there to begin with?
I would love to speak with you if the offer still stands. I can use all the help I can get. The counselors I have been to have not been helpful…they don’t “get it”. …..thanks Bon

Hi Linda, I am interested in any help that you can give me. I am really frightened. I have been given no information by my Pulmonologist, I am trying to change doctors, and have an appointment with an infectious disease doctor at the end of this month. I would like to have information at hand that doesn’t necessarily include starting treatment with the 3 antibiotics , I did that 5 years ago and my hearing suffered. If I can live with this for as long as possible without treatment I’d like to do that. Help is needed and welcome. Thank you