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.

Thanks, Terri, for your quick and supportive reply to my questions about taking probiotics with the antibiotic cocktail for MAC. My name is Sally, and I am 72 years old. I was just diagnosed with MAC, after I had suffered from 7 months of fatiguing coughing and throat-clearing. I had been to a number of doctors, who had diagnosed asthma, acid reflux, and possible heart probs. After a negative stress-echo cardiogram, and trying the acid-free diet, I found a great pulmonolgist at the University of Michigan, who immediately ordered a CAT scan and then a bronchioscopy, after seeing infection on the lungs on the scan. I will say that the bronchioscopy at the U-M was easy – they did put me out, It was similar to the mild sleep-state which you experience with a colonoscopy, except there was none of the dreaded preparation the night before! I was happy to have the bronchioscopy because it has offered a very nuanced diagnosis of pseudomonas (which cultured out after only a week in the Petrie dish) and MAC, which just showed up, after 3 weeks. I have been away from Ann Arbor for some weeks, so my doctor has been giving me these results over the phone. I will return to U-M next week to have another consultation with him and then to begin the MAC antibiotic treatment.
So I am very grateful to you, Terri, for your info regarding baseline testing for eyes, hearing, liver and kidneys. I will discuss these with the doc next week. And, Carolyn, thank you for your suggestion about Florastor, which your GI doctor prescribed for you to help your stomach withstand the meds. And, Robyn, I appreciate your recommendation of Renew Life probiotics, with 30 billion live cultures. I will look into this too. I hope to meet with a Nutritionist at the U-M next week to seek counsel about an immune-system-building diet, since a diminished immune system makes us more susceptible to lung bacteria.
I am much comforted to have found you all, appreciate your support and wish you well with your challenges. Sally

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@sumner

I have just been diagnosed with MAC, after also treating pseudomonas with a round of Levaquin, which ended last week. I am about to start the antibiotic cocktail for MAC. I would like to hear how you all have paired probiotics with your antibiotics treatment. What kinds of probiotics have been helpful to you in staving off the gastrointestinal side effects of the Rx? And in what dosage for this power-antibiotic assault? Thanks for thoughts about your experiences.

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@auntnanny I believe you’re asking me? I learned quite by accident from a CAT scan while in the hospital for another reason…followed up with recommended bronch and here I am!
BTW, I learned from our wonderful group founder that it’s quite helpful to specify to whom you’re speaking as I do with you…works very well!
Terri

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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, 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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@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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Thank you for your response. I’ve never had a broncoscopy but do have bronchiectasis (finally diagnosed at Rochester)…… it was 5 years of wrong diagnoses where I am. I was told in Rochester there was a small amount of MAC and they conferred and decided to not treat it at this time. Well….. that was two years ago and I just get worried that perhaps it has progressed– I have no way of knowing. I’m not really ill — just flares of the horrible coughing which they recommend antibiotics for me and I get over it in about a week. But…… feel uneasy wondering if MAC is worsening and I don’t know it. Thanks again

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@sumner

Thanks, Terri, for your quick and supportive reply to my questions about taking probiotics with the antibiotic cocktail for MAC. My name is Sally, and I am 72 years old. I was just diagnosed with MAC, after I had suffered from 7 months of fatiguing coughing and throat-clearing. I had been to a number of doctors, who had diagnosed asthma, acid reflux, and possible heart probs. After a negative stress-echo cardiogram, and trying the acid-free diet, I found a great pulmonolgist at the University of Michigan, who immediately ordered a CAT scan and then a bronchioscopy, after seeing infection on the lungs on the scan. I will say that the bronchioscopy at the U-M was easy – they did put me out, It was similar to the mild sleep-state which you experience with a colonoscopy, except there was none of the dreaded preparation the night before! I was happy to have the bronchioscopy because it has offered a very nuanced diagnosis of pseudomonas (which cultured out after only a week in the Petrie dish) and MAC, which just showed up, after 3 weeks. I have been away from Ann Arbor for some weeks, so my doctor has been giving me these results over the phone. I will return to U-M next week to have another consultation with him and then to begin the MAC antibiotic treatment.
So I am very grateful to you, Terri, for your info regarding baseline testing for eyes, hearing, liver and kidneys. I will discuss these with the doc next week. And, Carolyn, thank you for your suggestion about Florastor, which your GI doctor prescribed for you to help your stomach withstand the meds. And, Robyn, I appreciate your recommendation of Renew Life probiotics, with 30 billion live cultures. I will look into this too. I hope to meet with a Nutritionist at the U-M next week to seek counsel about an immune-system-building diet, since a diminished immune system makes us more susceptible to lung bacteria.
I am much comforted to have found you all, appreciate your support and wish you well with your challenges. Sally

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Hi Sally. Wow, it seems like your U of M physicians are on the ball! Unfortunately, many of us on this forum have also experienced doctors that weren’t looking for anything beyond an ‘asthma’ diagnoses during the on-set of these infections or even having bronchiecstasis. I am relieved for you that you now know what you are really dealing with and can take the steps to take care of yourself. We’d like to hear how your next appointment went for you.
The base-line test post that I sent you is actually a re-post from our former mentor, Katherine, she has left us a treasure trove of great information. If you read from past posts here on this forum; you will find lots of helpful information. (especially on Katherine’s post @katemn ) We are glad that you joined our forum. It is a wonderful group of people who support one another. Please feel free to jump in and ask questions or share some news. Just know that myself and others are here for you. Big Hug Sally! – Terri M.

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@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 Hi Jan! I came down with MAC in March of 2005. I KNEW I had something terrible and different. I was told it was bronchitis and was giving a weeks worth of antibiotic. I did not get well. I was put on other antibiotics for several months following that. Still, did not get well. Not a one did a sputem test to see what was making me so sick. Finally, I was referred to a specialist at a medical college; and they found the MAC. That was in the end of August. So, I went five months before a real diagnosis. I also learned after getting my hands on all past medical records that I was diagnosed with bronchiectstasis in 1999! No doctor ever told me that! The doctors that got those medical records afterwards never brought it up! I am so angry about that because I would have taken better pre-cautiuons had I known about it. I found out about my bronchiecstasis in 2013 after a visit to the Mayo Clinic from a CT scan.

Liked by tdrell

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@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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Thank you, Windwalker — for more details on how your diagnosis came about.  I think I’m just “running scared”…… and lots of things go through my mind.  Thank you

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@auntnanny Jan, I copy and paste the person’s @name and apply it to the replying post. That way the reply will get to that person.

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@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!!!

Liked by tdrell

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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

REPLY
@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

REPLY
@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.

Liked by tdrell

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