How is everybody doing?

Hello All! The forum has gone quite. Haven’t heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

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@auntnanny

windwalker —- thanks for the info but I have both shoulders torn past repair and I an lift almost nothing — and can’t pull anything at all. They want to totally replace both and I feel I’m too old and have too many problems. You are still young…….. things do change, —- not always for the good Ha!

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@auntnanny I know girl!!!!

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@auntnanny Jan, I guess the only thing you can do is drink a bottle of Elmer’s Glue and hope for the best!!!

Liked by tdrell

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@auntnanny

windwalker —- thanks for the info but I have both shoulders torn past repair and I an lift almost nothing — and can’t pull anything at all. They want to totally replace both and I feel I’m too old and have too many problems. You are still young…….. things do change, —- not always for the good Ha!

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@auntnanny Jan, I might be relatively young, but I feel 90 yrs old today. I fell down the last bit of my stairs yesterday from walking in my stupid bi-focals and missed that last step. I torqued my body good! Every square inch of me hurts. Been mostly worthless today. Plus, I stubbed my toe on a flower pot on the porch and saw stars; again STUPID bi-focals! They are going to kill me yet!!

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windwalker —– be very careful — the last thing any of us need is a broken hip to make us even slower. Watch those steps — and yes, bifocals can be a pain for sure. I had lasik surgery when I was about your age and was the best thing I’ve ever done. I hated wearing glasses and even now, after cataract removal, etc., I still don’t have to wear them. Just something else to “think about”. Jan

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Auntnanny and windwalker…FYI…..I was diagnosed with asthma at age 43 a year after I spent 6 weeksa battling a severe viral respiratory infection. I finally got it ….the asthma…under control….after a year of oral bronchdilators….3 inhalers at a time.
for next 28 years a balance of wellness then respiratory infections requiring the usual grocery list of meds….always under an allergist and pulmonologist’s care….ANd 8 months ago at NJH …I had the gold standard test for asthma…the Methocholine Challenge test…which resulted in showing I absolutely do not have asthma….go figure tdrell

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Teri, sorry you are having trouble. I am trying to find the thread that said a mayo doctor prescribed different antibodies to treat Mac instead of big 3. I have been on big 3 twice but was very ill both times. I recall the doctor told her that the big 3 were something of a go to treatment.. Would you let me know any alternative drug therapies you have heard about or read about. Thanks so much and I hope everything improves for you.

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@tdrell

Auntnanny and windwalker…FYI…..I was diagnosed with asthma at age 43 a year after I spent 6 weeksa battling a severe viral respiratory infection. I finally got it ….the asthma…under control….after a year of oral bronchdilators….3 inhalers at a time.
for next 28 years a balance of wellness then respiratory infections requiring the usual grocery list of meds….always under an allergist and pulmonologist’s care….ANd 8 months ago at NJH …I had the gold standard test for asthma…the Methocholine Challenge test…which resulted in showing I absolutely do not have asthma….go figure tdrell

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@tdrell Terri, I have the same story. Unfortunately, lots of people get thrown into that easy ‘asthma’ basket.

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@suzylulu

Teri, sorry you are having trouble. I am trying to find the thread that said a mayo doctor prescribed different antibodies to treat Mac instead of big 3. I have been on big 3 twice but was very ill both times. I recall the doctor told her that the big 3 were something of a go to treatment.. Would you let me know any alternative drug therapies you have heard about or read about. Thanks so much and I hope everything improves for you.

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@suzylulu Thank you , Suzy. I am not as sore as I was from my fall the other day. That was me who said that my dr doesn’t like to put people immediately on the BIG THREE when they are first diagnosed. He said that 90% of the time the infection goes away on it’s own or he likes to put you on a single antibiotic for awhile to see if that chases it away for awhile. Right now, I am on alternating months of cipro and tobramycin because I had a pseudomonas infection last spring. Before that, I had one colony of MAC growing in 2014 and was placed on alternating monthly meds of cipro and doxycycline. This regimen has worked for me so far. Plus, I do twice daily nebulized 7% saline. In my opinion (and my dr’s), every one of us should be doing the saline. Suzy, there are so many variables with our diseases. I don’t believe there is a one size fits all solution. I bragged about the tobramycin because it worked for me, yet it made poor Katherine very ill. I am not sure if it was indeed the ‘toby’ that made her so sick as she was probably experiencing sepsis coming on from her tremendous bacterial load. We all on this forum just have to keep searching for answers and learn all that we can about this. Have you had your sputem tested recently? How are you doing?

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@auntnanny

windwalker —– be very careful — the last thing any of us need is a broken hip to make us even slower. Watch those steps — and yes, bifocals can be a pain for sure. I had lasik surgery when I was about your age and was the best thing I’ve ever done. I hated wearing glasses and even now, after cataract removal, etc., I still don’t have to wear them. Just something else to “think about”. Jan

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@auntnanny Jan, so funny that you mentioned lasik surgery. That has been on my mind a lot. I have tried contacts without success due to extreme dry eye, the progressives give me double vision in my peripheral field, I lose my glasses out in the world if I have two diff ones Reading /distance (sigh) am using bi-focals now, but not wearing them much, because when I do, I walk into things. We have only one Lasik guy here in my little town and he was sued for permanently blinding someone. So, I will probably have it done in my home city.

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@auntnanny

windwalker —– be very careful — the last thing any of us need is a broken hip to make us even slower. Watch those steps — and yes, bifocals can be a pain for sure. I had lasik surgery when I was about your age and was the best thing I’ve ever done. I hated wearing glasses and even now, after cataract removal, etc., I still don’t have to wear them. Just something else to “think about”. Jan

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Wait, Terri @ wind walker!! LASIK caused my chronic dry eye. Definitely get several professional opinions before you do this! Unfortunately, there are dr’s out there who will do it without assessing your specific risks.

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@suzylulu

Teri, sorry you are having trouble. I am trying to find the thread that said a mayo doctor prescribed different antibodies to treat Mac instead of big 3. I have been on big 3 twice but was very ill both times. I recall the doctor told her that the big 3 were something of a go to treatment.. Would you let me know any alternative drug therapies you have heard about or read about. Thanks so much and I hope everything improves for you.

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Thank you so much Teri. I see the infectious disease doctor next week and wanted his opinion. He has prescribed the big 3 twice and I was deadly ill. Currently I am not on anything. Building strength and weight back.

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@auntnanny

windwalker —– be very careful — the last thing any of us need is a broken hip to make us even slower. Watch those steps — and yes, bifocals can be a pain for sure. I had lasik surgery when I was about your age and was the best thing I’ve ever done. I hated wearing glasses and even now, after cataract removal, etc., I still don’t have to wear them. Just something else to “think about”. Jan

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@cld120 Thanks Carolyn; duly noted!

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terri how did you get rid of everything? Did you take the big 3 for 2 years, or do other things. I cant tolerate the pills anymore so just doing aeribica and exercise. Honestly, I know I am getting slowly worse. Kind of scared of choking because sometimes blood comes up and quite frankly would rather go another way (like Katherine) than choke to death. Please post others that have bloody sputum or Hemoptysis. Hearing how others cope with this maks me more comfortable. xo Christa

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