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Restarted MAC meds

Posted by prelle1 @prelle1, Mar 15, 2020

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.

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gej53 | @gej53 | Mar 15, 2020

Just wanted to say that I had an aunt with pulmonary fibrosis who took a low dose Prednisone daily to treat. She lived to 93. Hope that is encouraging. I can't believe the doctor made it a "death sentence" with a time limit.

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irene5 Irene Estes | @irene5 | Mar 15, 2020

@prelle1 I think we would be more prone to having a difficult time if we contracted the virus. It is a scary time for all of us. That is wonderful that you found a doctor to help you. We live in Connecticut and have found UMASS Worcester has excellent pulmonologists and ID doctors that are helping my husband (sarcoidosis) and me (MAC). They also have a specialty pharmacy as some places are hard pressed to obtain some of the medications. That might be a closer option for you. So glad you are having improved health! That’s reassuring for many of us I am sure!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 15, 2020

@prelle1 Hello. May I ask where you traveled from to go see the dr in Tyler, Tx? Did you test positive for mac and that is why you are back on the antibiotics? Had you been getting tested for mac over the past 5 yrs? I am glad that you got yourself some good medical attention. And, am also glad that you are feeling like your old self.

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prelle1 | @prelle1 | Mar 16, 2020
In reply to @irene5 "@prelle1 I think we would be more prone to having a difficult time if we contracted..." + (show)
@irene5

@prelle1 I think we would be more prone to having a difficult time if we contracted the virus. It is a scary time for all of us. That is wonderful that you found a doctor to help you. We live in Connecticut and have found UMASS Worcester has excellent pulmonologists and ID doctors that are helping my husband (sarcoidosis) and me (MAC). They also have a specialty pharmacy as some places are hard pressed to obtain some of the medications. That might be a closer option for you. So glad you are having improved health! That’s reassuring for many of us I am sure!

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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.

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2 replies
toni1132 | @toni1132 | Mar 19, 2020
In reply to @prelle1 "Thank you so much for your reply. I live in RI in summer and in winter..." + (show)
@prelle1

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.

Jump to this post

I have bronch/mac myself. My daughter just called me.... a friend of a friend of hers just tested positive. The gal had been to Orlando for a travel soccer game of her daughter's. This is how it spreads...… be careful friends... Toni

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1 reply
toni1132 | @toni1132 | Mar 19, 2020

How horrible for you !!! What a terrible attitude of these doctors! Thank God you found one that is informed !! Best wishes.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 24, 2020
In reply to @prelle1 "Thank you so much for your reply. I live in RI in summer and in winter..." + (show)
@prelle1

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.

Jump to this post

@prelle1 I pray you will be alright and not get the corona virus.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 25, 2020
In reply to @toni1132 "I have bronch/mac myself. My daughter just called me.... a friend of a friend of hers..." + (show)
@toni1132

I have bronch/mac myself. My daughter just called me.... a friend of a friend of hers just tested positive. The gal had been to Orlando for a travel soccer game of her daughter's. This is how it spreads...… be careful friends... Toni

Jump to this post

@toni1132 Hi Toni. Has is your daughter's friend doing? There was a 34 yr old young man that had come home from Orlando (Universal Studio Park) with covid-19. He passed away last week. I pray that your daughter's friend will fare better and recover.

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