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Hi Terri, I was just reading through so much stuff! I have not been on any meds for my MAC for 2 years now. I just got a bit worried about not taking meds. My doctors are not very helpful and I have been just so helpless and tired. I was given Brio to inhale and that was a bad experience. I am going to ask my doctor for the sale to inhale and I’ll use it until I go to Mayo Clinic in September! I am so grateful for the privilege to get that appointment!!! I have been very weak and tired everyday. I am so excited to start a new treatment plan an at Mayo Clinic!! Thanks for all the help and it’s great to read all the news and know that I’m not alone in this. Rita.
Replies to "Hi Terri, I was just reading through so much stuff! I have not been on any..."
Hi Rita @america I hope all goes well for you at Mayo. I am about to go off the big 3 after 3.5 years. Can you please update us on what your Mayo doc suggests to do now. I am from NZ and we seen to be a bit behind. Heather
Hi Terri, I will be seeing dr Leventhal! 🙂
Hi Heathert, I will give you all the updates when I see him in September! I am looking forward to seeing dr Leventthal at Mayo!
@america Yay! You will love him. I do!
@heathert Hi Heather! Wow! You are finally coming off of your meds, Congrats!!!!! We need to celebrate!
@windwalker thanks for that however........ I had forgotten to tell my Dr about my 2 small bleeds, so I emailed her yesterday, she wants to see me again and stay on the meds another 6 months now. That excitement was short lived.
@heathert Well Dam#it !!!! Were those two bleeds from coughing? Are they sure it was from any kind of mac? Or doing it 'just in case'? Arghhhh!
@windwalker yes both from coughing, the first one I had juice from an orange go down my windpipe so dont know if that helped. I will see my specialist on Friday so will know more then, but It sounds like she thinks it could be mac.
Any great doc or support group in Boynton Beach or Delray Beach Florida or Boca Raton. For Mac
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@america, Hi Rita. I am right there with you on the low energy scale. I spent the last two days in jammies, on my couch watching movies. That is so not me, but I roll with it. Some days I have some energy, some days - not so much. (Hot humid weather is slowing me down). I am glad that you are taking the time to read through past posts. Will you be seeing Dr.Leventhal at the Mayo?