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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@auntnanny

Terri ……..Thank you — for your response. I’m also wondering about any others and how their diagnosis came about. I appreciate what you do.

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@auntnanny, I will call you. My number starts with 520, so look for me! P.S. any others that feel inclined to give out your phone numbers to someone on the forum, please do it on the private e-mail. It is not safe to put it out on the public forum. Jan, I will have Colleen remove that for you. Will call you now.

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Hi everyone! I just completed my second round of antibiotics for bacteria in my lungs, and they didn’t work. I first was on Bactrin, then Cipro. I had 2 days of feeling well, then my low grade, 99 degree temp came back with its aches and chills. It arrives at 5 pm and lasts about 2 hours. I will report this to my Infectious Diseases doctor and he will probably want to put me on another antibiotic. Does anyone know of a drug that doesn’t cause diarrhea? I’m sure he will want to treat this. robynmar

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@robynmar, Hi Robyn! I don’t think anyone can answer that question because everybody’s body is different. For example, Cipro doesn’t bother me in the least. They should have done a suseptibility test when they cultured your sputem. That test should contain a list of antibiotics that will work on your particular strain of bacteria. From that list, you can ask him which ones are less likely to give you diarrhea. Hang in there girlfriend!!!

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@robynmar

Hi everyone! I just completed my second round of antibiotics for bacteria in my lungs, and they didn’t work. I first was on Bactrin, then Cipro. I had 2 days of feeling well, then my low grade, 99 degree temp came back with its aches and chills. It arrives at 5 pm and lasts about 2 hours. I will report this to my Infectious Diseases doctor and he will probably want to put me on another antibiotic. Does anyone know of a drug that doesn’t cause diarrhea? I’m sure he will want to treat this. robynmar

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Robynmar, I just read your post and wanted to say I’ve had close to similar situations with what you describe — Bactrim and Cipro. What works for me a clindamycin and a probiotic (30 million size) — any brand —- and I get along with that and it works for me. Again, it really depends on which type bacteria they are trying to treat. Levaquin is another possibility — but I would go for the clindamycin — 150 mg 4 times daily —– or you can do 300 mg twice — I’ve done both. Hope this helps

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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Auntnanny….do any of your Doctors do chest CAT scan? Tdrell

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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tdrell —— I had a cat scan at Mayo’s two years ago when I was diagnosed. And….. had another one about 3 weeks ago locally. Sent a copy of the scan to Mayo’s and my pulmonologist there wrote me a note saying some of the scan looked a little better than 2 years ago and the rest was about the same. I was hoping nothing had worsened so I felt good about that.

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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Auntnanny….I asked re CAT cause I believe that NJH monitor NTM with CAT scans and the 3 sputums….glad u have had them….and most recent one was a little better!!!
Tdrell

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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@auntnanny, Jan, that is good news! “a little better” and “about the same” is very good news. This is a degenerative disease that we have, to keep it STABLE is our main goal.

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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tdrelll —- Of course I would have loved to hear that everything was better but as windwalker says — little better and about the same is surely acceptable to me. I do nebulizer once or twice daily (usually twice) with albuterol followed by saline. Takes me about 30-40 minutes to do that. I’m not a TV person, but I try to do it when there is something on that I might like. Goes fast that way. And every 4-5 weeks I get another flare coming on so I try to get a sample right then and get the analysis so we can see which bacteria is flaring this time. It just keeps going…… but I’m really not “sick” — unless I don’t get started on antibiotics right away. If not, I get to feeling bad. I’m learning to try to nip it in the bud. Just hope I don’t become immune to the antibiotics. Always a worry……Mayo’s hasn’t asked me for 3 sputum tests — they’ve been making decisions from just one. I’ll be prepared if they ask for three. Jan

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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windwalker —– yes, I think that’s all we can wish for. Dr. Moua told me upfront they could not cure it but he thought they could manage it. I’m wanting very much to believe that. Jan

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@cld120

@auntnanny, my MAC was discovered via a long route, like others too, I suspect. I also was told I have mild bronchiecstasis. (Irreversible underlying lung disease) I started coughing last November & finally went to my dr at the end of January, 2017. I’d been exhausted the months preceding it, as well. After several abnormal lung x-rays & being treated for pneumonia, I had a CT scan. My dr referred me to a pulmonologist, who did a bronchoscopy. I was only worried about lung cancer (my mom developed it at age 66; I am 59.)

After subsequentally being diagnosed with MAC, I read everything I could find and made an appt to go to the Rochester, MN Mayo Clinic, a great decision!! Just beginning the “Big Three” meds and hoping the Infectious Disease specialist I see at the end of August at the University of Kentucky Medical Center is someone I can work with.

I did not have a good experience with one locally prior to going to Mayo. He seemed quite out of touch regarding MAC & made ~a half dozen totally false statements about it. For example, he said it does not involve fatigue & is not being diagnosed more frequently–it is, especially in the southeast U.S., according to my Mayo dr. Oh yeah, and that he can cure everyone, except those who are non-compliant with their meds! Grrrr…

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@auntnanny, Jan, I pull double duty too when I nebulize. I am doing it now, both albuterol and saline after. I use this time to respond to this forum.

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@auntnanny, Jan, you are so active, so I know you are getting exercise. I am guessing you eat nutriciously as you are after all a ranch-hand cook. And you live on a large ranch, so you are probably somewhat isolated, and most likely on well water. I feel like you have a lot of ‘plusses’ in your lifestyle. Just be mindful of breathing in dust, mold, and soil particulate. You should be able to live out your lifespan. You will just have to keep an eye out and take measures to stay infection free for the rest of your life. Hugs!

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