Thx for your reply
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Thank you so much for your reply. I live in RI in summer and in winter at Tyler so it isn’t so far.
I don’t know why there is a problem with the meds as they are all so easy to find. I was in fl and exposed to corona and am self isolating for 2 weeks. It is a scary time for us as we are the vulnerable population.
I restarted My MAC meds after 5 years . I had been so tired I couldn’t even go upstairs without concern. After 2 months I was climbing upstairs with no worry . I have no side effects and feel like myself again. Just hope I don’t get Corona virus. I am worried that we are at much greater risk than others , Any opinions ?
I traveled to Tyler Tx to see Dr Julie Philly. She is wonderful . I was at MDA fir years and was given nothing but the boot on this disease. My lungs were starting to get fibrosis . The Doctor told me it was unexplainable and not related to the MAC. It was just some people get it . That is a death sentence in about 3 years and this guy did not want to treat. My doc in Rhode Island says he doesn’t treat it either so I was just waiting to die until I found Dr Philly.
Does anyone know of a doctor’s name or names that you might refer me ? I have been going to MD Anderson and they just refuse to follow up or give any treatment options. I was put in the Big 3 in 2009 and did well but they never even did a CT scan or any sputum cultures when i finished the drugs and they never even explained any side effects regarding eyes or hearing so I have been pretty much in my own . I am so fatigued that I am considering myself to be an invalid and did not know what to do. I found your blog and I am so thankful to all of you and now I realize how shabbily I have been treated at MDA . I was so ignorant I didn’t even know you should have a C.T. scan or sputum cultures . I will go anywhere to see someone who might treat me will a little dignity and caring. I am in Houston . Thank you!
Who is the doctor . Could I have the name also, thanks , my docs here have been pretty useless!
I was so tired that I couldn’t walk across the room in 2008. Went on the 3 meds and seemed wonderful . Now the fatigue is back and I think I am going to try the meds again. I just don’t want to live with this quality of life. But then again I do want to live!!